Share Your Story: Jenny12

quote that reads I have always had heavy, painful periods since age 9.

“Jenny12” is a 39-year-old woman living in New York. Officially diagnosed with Endometriosis five years ago, she shares her journey with us today.

Jenny12’s Journey:

I have always had heavy, painful periods since age 9. After many OBGYN’s trying different B.C. I finally had my first lap surgery 5 years ago, and was told stage IV with some adhesions on bowels that were unable to be excised. Did not really help with the pain with my periods, so I was then given Mirena, that was a huge mistake.

As a result the Mirena embedded in the wall, and once removed, I bled for 2 months straight, and a walnut sized tumor grew. I then had an ablation done (Sept 2017) to remove the tumor to try and control the bleeding. I was okay for about 1 month, and the tumor started to grow back. I then had a full hysterectomy (May 2018).

I was okay for about 5 months, and then the pain in stomach (so horrible) I went for a endoscopy, and the Gastro Dr. believes I have endo on the duodenum, as there was tons of food at the bottom of my stomach after a 20 hour fast, so slow digestions when the endo is inflamed in that area.

I am also having pain at 3 of the port sights where during the hysterectomy instruments were used, and I am being told by the OBGYN they believe this pain and swelling is because I have endo in the scar tissue, and the only fix is surgery to remove the scar tissue at the sites, and there is no guarantee that I will not have more endo in the new incisions?

I now have to track the pain, so I know when the cycle is, and account for a soft food diet, easily digestible when it comes, as to minimize the pain. And as for the incision pain, I have been told to try PT for abdominal stretching, and pelvic floor exercises before scheduling more surgery. NEVER ENDS. I have not been able to find any info. on endo on the duodenum? Thanks.

If you would like to reach out to Jenny12, send her an email!

*

I want to send a special Thank You out to Jenny12 for being brave enough to share her personal story, struggle, and journey with us today. I’ll be doing some research for Endo no the duodenum and keep you posted! And we’re all hoping you’re able to find further answers and relief!

Memo that reads "Tell your story"

And if YOU would like to share your story, please submit it to me.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Share Your Story: BMW

photos of Endosister, BMW

BMW has asked that I share her Endometriosis journey with you today. She was diagnosed when she was 13 years old and is now 32. We live in the same area, so I look forward to getting to know her better!

BMW’s JOURNEY: 

Where to begin… As I lay curled up in the fetal position holding my stomach with one hand typing with the other. I find myself just wanting to talk to someone anyone… Wait no not anyone someone who understands. I’m in pain.

And not take a ibuprofen and lay down pain. But mental and physical anguish.

I deserve an Oscar, an Emmy, shoot I’ll take a Tony. Every last one of us who fake it. No not sex but like we deserve a kindness award for not breaking balls when it comes to that. But fake being fine. Fake that smile of “I’m fine” when in reality we are not. Hollywood has nothing on us!!

I was diagnosed with this unwanted guest at 13. My father died a year before from cancer. Before I was diagnosed I was in and out of the hospital. My mother was told numerous times that my pain was in my head. I was lucky though my mother had suffered the same pain prior to having me. She fought for me! She didn’t care how many doctors said it was nothing she knew it was real. I on the other hand began to think I was crazy. I mean they are doctors they know stuff. I was 13 what else was I suppose to think. My first surgery was at 14. I was on my period and in pain but they did the procedure. They found the pot of gold or pot of never ending poop,  depends on who you ask.

Even after being diagnosed I was informed that I didn’t look or act sick. When I heard this I always wondered what does Endo sick look like? My Dad worked with last stage cancer. We didn’t find out until it had spread everywhere almost. He didn’t “act” sick. But I was told if I wanted doctors to believe me I had to look the part.

I had one issue: how do you look like you want to rip your own insides out. I did end up acting though I began to act “fine” I thought if I could pretend hard enough the pain would stop. Or at least everyone but my mother would stop looking at me like I was a drama queen when I said I hurt. I was put on birth control at 14. It gave me menopause symptoms. Night sweats, heat flashes, you name it I had it. So they changed my meds to the birth control shot. And boom no more periods. But now I was depressed and scared because I was still in pain. So they gave me two types of antidepressants. Which gave me suicidal thoughts and ended up with me being locked up for about two weeks in a mental ward. So in roughly two years I lost my dad, I lost my mind, and I lost myself. I began letting Endo control me.

At 15 I had my second surgery because I was still having pain. The doctor informed me and my mother that the Endo had spread “everywhere”?!? I was not sure what that meant. He showed us photos pointing out red dots and saying that it was endometriosis. My pain was cause by a dot was all I could think. He informed us that there was nothing he could do. He put me back on the shot. He did mention the pregnancy might help with the pain. Yep he told a 15 year old girl that having a baby might help. Needless to say my mom was quite pissed. He smoothed it over by informing her that I most likely would never be able to have kids.

I was sitting right there.

He said it so casual, I cried when I got home my mom reassured me that 1.That the doctor was an ass. 2. Nothing is written in stone. I, in return, pretended to be fine.

Endometriosis had just shoved me in the locker and dared me to tell someone. By sixteen I was mentally drained I had two laps, many different meds I put on antidepressants and topamax. And I started dating. I wanted to be normal and I was for the most part. At 16 I honed faking it. I became a flake because I didn’t want to tell anyone I was in to much pain to go out. I sucked it up and pretended if my boyfriend so me in pain I played it off. Because “No guy wants a sick girl” yep someone told teen me that. I felt so small I didn’t want to be sick. I wanted to be okay, I wanted to do what my friends did and not pop ibuprofen like candy to attempt to get through a day.

But I wasn’t okay but again I pretended. Endo was pushing me around and I was letting it. I stayed on the shot for seven years. After getting off I didn’t have my a period til two years after I stopped the shot. Then bang the pain increased. So they gave me the ring. I was 23 Great I thought I just have to keep one up there at all times.

I got married at 23 and moved cross country my husband is in the military. Still pretending I was fine. I stopped telling doctors I was in pain. One told me I had to have a period to clean myself out. (Yea, sounds real stupid right?) So I believed him I did it and by the third month I couldn’t get out of bed. I was alone in Washington State I knew nobody. My husband was on deployment. I was in so much pain I had to crawl to the bathroom I couldn’t make it to the kitchen at all .I was pretty sure I was dying or an alien was gonna jump from my stomach. By day four of only eating crackers that I had in my room and drinking water from the faucet in the tub because I couldn’t stand at the bathroom sink. The alien jumping out of my stomach started to sound good. I was terrified but I never said a word not to my husband in emails. Not to my mom in phone calls not even to my friends in phone calls. I would tell them I didn’t feel “well”. I acted as if the pain hadn’t changed.

When I did inform a female doctor of the horror I had gone through, she assured me it was normal sometimes females have”bad” periods. I tried to explain but swallowed my voice maybe I was overreacting. Endo had taken my voice again. Maybe it wasn’t “that bad”.

Looking back I could slap me! It was bad; it hurt inside and out. But I remained silent.

I got a new doctor who told after I explained to him my pain that I only needed to have a period to have a kid. And since I wasn’t trying to at 24. I could keep the ring in. So I did and life went on and so did I. I worked and cried in the bathroom when the pain got bad. I pushed through I had to I wasn’t gonna be weak.

Who wants a sick wife, friend, co-worker, employee. Nobody.

So I still let the pain bully me into silence. At 30 me and my husband decided to try for a baby. I removed my ring. And all hell broke loose! From period anxiety to bleeding bellybuttons. My symptoms are worse. And it’s scary doctors still don’t listen.

But I’m not going to be quiet anymore.

I lapse into faking it from time to time. But in all honesty I’m tired of being in pain. I’m tired of remaining silent because people might look at me strange. The hell with them!

I spent the majority of this illness blaming me. Hiding scared and alone. Not because I was actually alone but because I was ashamed of being in pain. Ashamed of being scared and looked at as weak or not good enough. Or seen as over dramatic. I will be damned if my nieces or God willing my daughter goes through what I went through. Nope!!!

Somebody is going to listen to me.

Words of Advice:

Don’t remain silent! Don’t let anyone make you feel crazy or less than because your in pain. You are more than your pain if you wanna cry. Then cry, scream , yell. Just don’t let the bully win.

If you would like to reach out to BMW, you can email her directly.

*

I want to send a special Thank You out to BMW for being brave enough to share her personal story, struggle, and strength with us today.  We are so glad you will no longer remain silent!!!

Memo that reads "Tell your story"

And if YOU would like to share your story, please submit it to me.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Share Your Story: Zoe

Zoe, a brave EndoWarrior, shares her journey with us today…even while she has another surgery pending. We wish you all of the best of luck, Zoe!!!

**

I started my period by having waterfalls for periods with no regularity from age 13 but was put on the pill to manage that at age 15 and that worked. I from my teen years thankfully had no interest in having children. I am not a career woman either, I just don’t get the clucky feeling other women get when they see kids – I get that feeling when I see animals instead so I have fur babies.

The symptoms that brought me to the surgery table in April 2016 (age 33) were intense cramping, sweating and then diarrhea after sex (sexy I know!) I also had very rare cases of period pain that felt like a longer lasting version of the pain I got after sex, other than that my period pain was usually manageable. I did find relief from the symptoms after the recovery of my first surgery.

It took me a very long time to get taken seriously by doctors about my symptoms and what were causing them. I saw a gastroenterologist (it must be your ulcerative colitis), a rheumatologist (maybe it’s something to do with the lupus) and then finally a gynaecologist about it. I was given an ultrasound at a regular ultrasound place and this was my first time having the probe go you know where! The ultrasound showed nothing, which I know now is pretty common as ultrasound technicians need to be specially trained here to look for endo and even if they are trained they can see only the deep infiltrating endometriosis (DIE) and adhesions.

I was put on a public waiting list to see a gynae about my symptoms and they advised me of the laparoscopic diagnosis and removal process, I said I wanted the surgery. They saw me again in another 3 months just to be sure I still wanted the surgery and then I was put on a wait list for the actual surgery. So all in all, first enquiry through to surgery it took 15 months for me to be on the operating table!

The surgery found that I had stage 3 endometriosis and all lesions were removed, I was also found to interstitial cystitis in my bladder (they also sent a probe into my bladder). They put a mirena in to control the return of the endo hormonally and I was on my way – albeit in a lot of pain that day; from being on the operating table with a breathing tube for 3 hours – I had no idea how raw my throat would be and how much it would hurt! having only had short surgeries in the past.

As I mentioned I got relief from these symptoms, I also eventually had no period because of the mirena (OMG best thing ever!)

From mid-2017 I started to get decent period cramps however for a couple of days every few months then it became monthly then fortnightly, then weekly then half the week until by August 2018 it was almost every day and then it WAS everyday. At the end of 2017, I asked my GP to refer me to a gynaecologist, my GP referred me to the gynaecologists at the local hospital (I had moved to rural Australia by then).

The gynaecologist looked at my history and saw that I had stage 3 endometriosis in the past but still did the usual “are you sure it’s not your ulcerative colitis?” so off I went to my gastroenterologist and described my symptoms, he confirmed that my ulcerative colitis would not cause new symptoms like this and my very recent colonoscopy showed the ulcerative colitis was very mild at the moment with the medication that I am on for it keeping it under control. So back to the gynae I went, the gynae agreed that it might be time for some more endo excision surgery but first he wanted me to see one of those ultrasound technicians that are trained to see endo. I asked why and the gynae said because he does not have the skills to excise stage 3 or stage 4 endo so he would need to send me to the city hospital if there is deep infiltrating endometriosis (DIE). This meant that I could not be placed on any surgery waiting lists until the scan results were in GRRRR. So off I went on an hours drive a couple of weeks later when I could get the appointment with this ultrasound place and I do recall that he (the Dr doing the ultrasound) noticed something on my bowel but he said to me that he was unsure whether it was endometriosis or scar tissue from my previous surgery. Either way the results of the ultrasound were nothing related to deep infiltrating endometriosis (DIE), the only finding listed was that my left ovary had limited mobility.

I had pain everyday by this point and whereas the period pain was mostly in my legs to begin with, now it was mostly in my lower back and felt like period cramps only all the time! The cramps got worse when I needed to poop too! And after I pooped the extra pain hung around. I took more than the recommended dose of paracetamol aka Tylenol because the maximum dose didn’t cover me for 24 hours and due to my ulcerative colitis I am not allowed to tale NSAIDS which is what most people use for period pain.

So I waited 4 months on the waiting list to get my surgery at the local hospital and a replacement Mirena iUD and when I woke up I swear that I had some kind of convulsion and then when I (still groggy) spoke to my gynae he said that he had found that my right ovary was stuck to my uterus which he had freed up and also (I thought he said) he removed a cyst on my ovary. He had also found that my uterus and bowel were stuck together and that I’d need a colorectal surgeon (in the big-city hospital) to separate them. 

I went into the recovery area of the day surgery unit and asked them if I had some kind of convulsion when waking up, they said that I didn’t and then they said I could leave. I had no information on my surgery other than some generic pamphlets on the type of surgery I had; so I asked the nurse to give me an operation report and she checked and came back to me saying that the gynae has already spoken to me and told me what happened so I didn’t need anything other than the pamphlets to go home with. I argued that I was still doped up when the Dr spoke to me and then I asked if they were  going to send me home with pain meds and the nurse said that they don’t usually but that she would check. When she came back, she had a prescription for pain meds and said that she will request a wheelchair and someone to push to get me to a car (which my partner was driving). It took about 15 minutes for a wheelchair to arrive and in the meantime I was approached by one of the doctors who attended my surgery and I asked her and received an operation report.

Once home, I decided to indulge by taking the maximum dosage of my codeine paracetamol pain killers, I had my partner caring for me and then my auntie so I had not a care in the world! I also took degas and made sure I had lots of cushions on the bed to lift me up as well as maternity undies so they were nice and loose on my wounds. I was still hunched over from the pain when I walked but I felt pretty floaty and a-OK. I didn’t poop or feel like I needed to poop for 7 days or so and then suddenly, I needed to poop but it wouldn’t come out! It was sticking out of me and I could see that my whole genital area was stretched by it but the poop appeared huge and was stuck. I spent 3 hours on the toilet – afraid to push hard for my stitches and internal surgery wounds. I called nurse on call who said to wait it out (IT HAD ALREADY BEEN 3 EXCRUCIATING HOURS) then I called the ambulance and they wanted me to speak to a Dr about whether I required an ambulance or not. While I waited for a call from their Dr I felt a huge wash of nausea and needing to poop so I sat  on the toilet with a bucket in case I puked and my body did an automatic huge push and pushed out the obstruction in my bowel. It was a couple of minutes later that the ambulance Dr answered the line and I let them know that it had sorted itself out. This is a warning about opiates – take stool softeners with them!!!

The period pains hadn’t diminished and I had to wait 2 months to see the gynae again so I put into motion the referral process to a big-city gynae through my GP. Initially I was referred to the closest big-city hospital but I never heard back from them even though when I called them they told me that they had received my referral. My doctor later suggested that she refer me to a private gynaecologist that I would need to pay for but the surgery itself would be via the public system (=free) so I agreed and my GP got her personal mobile phone out and started calling people that she knew in the medical industry to find a gynae that could do my surgery at a public hospital. My GP eventually found the gynae who is going to do my next surgery ( I think that she was sick of seeing me every week for tramadol prescriptions!)

I saw the gynae that did my surgery in 2018 for a follow up in late January 2019 and let him know who I had been referred to and requested a support letter for me having a hysterectomy on the next surgery which he gave me as he believed it would help my symptoms as well as knowing that I did not want kids. He also wanted to check my Mirena to make sure that it was in place properly and alas he could not find the strings! I then had to do a pregnancy test (negative thankfully) and another ultrasound. This ultrasound found my Mirena where it should be but somehow the strings had gone AWOL and it also found that my left ovaries were immobile (again as with the last ultrasound). I had a follow up with the gynae and asked him about why he found disease in my right ovaries yet the ultrasounds said that it was always on the left. My gynae said that ultrasounds are not as accurate as surgical diagnosis.

In between these appointments my GP moved from the rural doctors surgery so I had another GP and this GP specialised in womens health (woohoo!) This GP suggested that I go off the tramadol and onto Lyrica instead and I have been on this ever since (along with the max dose of paracetamol/Tylenol).

I saw the gynae that I was referred to on the 27th of February and it turns out that he was the very gynae that did my first surgery in 2016! We together agreed that the best approach for me seeing as I am now 35 years old and still do not want kids is to have a hysterectomy during the surgery. The gynae offered to give me drugs to shut down my ovaries until surgery (which should stop my daily pain) but I declined because I did not want the menopausal symptoms. The gynae asked that I get another ultrasound at a clinic in the city to check how deep the endo is into my bowel which would therefore determine whether he needed a colorectal surgeon at the surgery or not (depending how deep it is). He also informed me that if they do any kind of bowel resection, I will need a stoma (colostomy bag) – which I was really dumbfounded about until he explained that it was due to all the immunosuppressing drugs that I take for ulcerative colitis and lupus. The gynae also let me know that he believes all the Autoimmune disorders I have (lupus and ulcerative colitis) are related to the endo and interstitial cystitis (which I am still not sure what that is other than perhaps endo of the bladder?) The gynae agreed that Lyrica was a good choice for my pain and told me that even after the surgery I may need to take it and to see a pain clinic. He said it was because I had been in constant pain for so long, my nerves are hypersensitive and probably won’t realise that the pain is gone.

On the 21st of March I had my ultrasound booked in at 12pm with the only technician that my gynae trusted the word of. I would also have to do my first bowel prep before the ultrasound. Well, not my first bowel prep (I have ulcerative colitis so need to do regular colonoscopies) but my first one for before an ultrasound anyway! The bowel prep involved a laxative pill the night before and then a “fleet enema” an hour before the ultrasound. This was so they could clearly see my bowel wall and how deep the endo was in in without having poop and toots in the way! The pill was easy, no special diet on the day before or anything. The fleet enema was going to be a problem though because I live 2 hours drive from the city where this ultrasound tech is, so they said I can use a room when I get there and do the enema in there. My partner and I arrived an hour early (for the enema) and struggled to find a park, ended up finding 2 hour parking a couple of blocks away which should be enough but it wasn’t because the ultrasound was late doh! But anyway back to the enema… the enema felt awful! It felt OK at first and then I felt this really hot liquid churning around my belly and then the need to go to the toilet immediately or its gonna come out anyway. I kept going back to the toilet every 10 mins after that as well with just a little brown liquid needing to come out. Not my favourite bowel prep but at least it was fast I guess! We waited and waited and I went back and forth to the toilet until my partner had to make the trek out to put more money in the parking meter and that was when I got called in for the ultrasound. The ultrasound was done with the usual “magic wand” (as I like to call it) up the vagina and they pressed it uncomfortably against my bowel to see what they needed to see. Thank fully what they saw was that the penetration into my bowel wall did not appear to be deep and that it was my ligament stuck to the bowel not my uterus itself! I also had 2 very mobile ovaries so perhaps in the other scans, my bowel was pressed against them stopping them moving?

The good news from these results is that a colorectal surgeon is not needed for my surgery so no stoma / colostomy bag! Hooray! I also wholeheartedly believe that the reason that my endo hasn’t progressed much since the first surgery is because the Mirena has been controlling it hormonally. Sure I have pain and my ovary was stuck to my uterus as well as my ligament stuck to my bowel but that is nothing compared to my 2016 surgery. I feel that my adhesions in the last surgery and currently could have even been from the scar tissue where endo was removed in my 2016 surgery but I am no surgeon and I will haveto see what my gynae thinks of that theory after my next surgery.

😊

At this stage my pain is well managed (for the most part) with Lyrica 75mg at night and Paracetamol / Tylenol slow release during the day. I sleep the night with zopiclone sleeping pill and sometimes am kept awake by mild pain if I don’t take my sleeping pill. My surgery should be in July and I’ll be sure to keep you posted 

**

Zoe allowed me to see her previous surgery reports, scans, and prep docs to share them with you today:

On April 26, 2016, Zoe had an outpatient laparoscopy because of complaints of pelvic pain after sex (which sometimes included sweating and diarrhea), as well as menstrual cramps that mimicked her post-intercourse pain. She had a D&C (dilation & curretage done) to clean out some uterine lining, a cystoscopy to check out the inside of her bladder, excision of endometriosis, and a Mirena IUD placed. Care to see her surgery photos?

The findings of her surgery? Evidence of interstitial cystitis, deep infiltrating endometriosis, a large nodule on her left uterosacral ligament, a large right pararectal nodule, and superficial endo around her right broad ligament region. Her tubes and ovaries were normal, and they confirmed the fact that she has a retroverted uterus. The nodules and endo lesions were excised and sent off to pathology. The biopsy confirmed endometriosis found on her right broad ligament, the left side of her Pouch of Douglas, the right side of her pelvic wall, and both nodules were endo. The lining removed from her uterus came back as as “no evidence of endometritis, hyperplasia, or malignancy,” but no mention of adenomyosis, since that is often located deep within the uterine wall.

In 2018, Zoe had transabdominal and transvaginal ultrasounds due to pain. It showed that she has a retroverted uterus, with evidence of a 1cm fibroid within her uterine wall. Her Mirena was shown to be correctly positioned. Both a retroverted uterus and fibroids have been known to cause pelvic pain. The ultrasounds also showed that Zoe’s left ovary was slightly stuck to the middle of her uterus. During the examination, her left uterosacral ligament was tender. There was no evidence of deep infiltrating endometriosis.

In November of 2018, she had her surgery. Endometriosis was excised (cut out) and ablated (burnt off), adhesions were removed, a D&C was performed (to remove excess uterine lining), and the Mirena IUD was inserted. Her right fallopian tube and ligament were stuck to her pelvic wall; right ovary was stuck in the cubby of the ovarian fossa; a nodule on her right uterosacral ligament which may be deep infiltrating endometrisiosis was discovered; and her rectum and sigmoid colon were stuck to a uterosacral nodule, too. The op report states, “left tube and ovary normal;” no mention of it’s immobile nature found in the ultrasound. The noted stuck bits were freed and a biopsy of the uterosacral ligaments and nodules were performed. She’s provided her 2018 surgery photos for your viewing pleasure, should you so desire.

In late January of 2019, Zoe underwent another pelvic ultrasound due to her worsening symptoms and the missing IUD strings. The ultrasound confirmed the retroverted uterus, as well as the Mirena being perfectly placed within the uterus. It also found that the left ovary was “poorly mobile.” I don’t recall reading anything in her November op report about freeing the left ovary from it’s sticky place.

On March 21, 2019, another ultrasound was performed. A bowel prep was advised so they could have a clear image of her pelvic region. The radiologist reported that a Mirena IUD may make diagnosing adenomyosis by ultrasound difficult, but it didn’t appear that there was any adenomyosis. Both ovaries appeared mobile and were not tender. A nodule was present on Zoe’s right uterosacral ligament and the bowel seemed stuck to the nodule, although the nodule did not appear to infiltrate the bowel wall. The nodule may simply be scarring from previous surgeries or it may be recurrent endometriosis. Unfortunately, one cannot tell from imaging studies.

Share Your Story: Melanie

Melanie standing in front of a cart of fresh baked artisan breads

Melanie Rossiter is writing a book about Endometriosis (which is available on Amazon) and wanted to share her Endo journey with us today.

Melanie’s Journey:

This story is taken from the introduction of my book ‘Reclaiming Feminine Wisdom: An Empowering Journey With Endometriosis’.

My struggle back to health began two weeks after the birth of my second child. I had to have postnatal emergency surgery for a retained placenta, which was followed by pain, adhesions (scar tissue sticking tissues or organs together), and endometriosis.

All this happened whilst attempting simultaneously to look after my new-born and one year old. At the time I kept a big smile on my face, replying, “everything’s fine” to the outside world, whilst my health began disintegrating before me. Not to mention the cascade of hormonal fluctuation from having two children so close together, I wondered if I was literally losing my mind; I would find myself half way through a sentence and completely forget what I was going to say.

There was no time to process the trauma from my postnatal experience, and so it just dripped out over the coming year, with unexpected twists and turns, and eventually some amazing gifts arose from the experience.

Prior to having my children, I had always had some degree of pain around my periods, but I managed them fine, and they never altered my life. It was only before the birth of my first child that they were becoming increasingly more painful. I was very lucky to conceive both of my boys quickly as it was beginning to look like I had endometriosis. Whilst pregnant, there was no pain because my periods had ceased, although this isn’t always the case when pregnant for all with the condition.

My mum had also had painful periods, and I was led to believe it was normal and told to take painkillers as that was what my mum did when she had her period. This is a story that plays out in many households around the world. My grandma had painful periods and so menstrual health was an issue that played out with the women in my immediate family, and I’m not sure how far back through our ancestral line. Women have painful periods, right?  

Well no, pain whilst menstruating is not normal, this was a revelation for me. Throughout my teenage years and twenties, there was usually a degree of discomfort or pain, depending on the month, but luckily, at this time it didn’t have any control over how I lived my life.

If you grow up believing that periods are supposed to be painful and this is true for you in your experience, you do not question it. I had no education on what having painful periods meant from a holistic or medical point of view, I just thought it was what happened to all women.

The wake-up call post-birth of my second child happened after continually going into triage in hospital with jelly-like pieces of tissue from my womb; I did not realise that this was placenta at the time. I wasn’t sure because I had been told after birth that my placenta had all come out, the midwife even offered to show it all to me after the birth. We were always told to go to triage if we had any postnatal bleeding or problems, but I was repeatedly told to go home and wait to see if it would clear on its own. Eventually I ended up feeling I needed to push for a scan as my intuition was telling me something serious was going on and the wait-and-see approach was beginning to wear thin.

Finally, after a few visits, one of the doctors agreed I needed a scan and he began to take it more seriously. He said he would put me through as an inpatient rather than an outpatient to try and speed up the process. The doctor was pushing the radiology department for it urgently but they kept replying that they were very busy; but I was on the list. He told me it was likely to be around five days before I would be seen.

I am still shocked looking back at this. I should have taken myself into A and E. However, because I did not at this point class myself as an emergency, I didn’t go. I did not want to waste their time if I was wrong, and at that time I didn’t feel that I was in an emergency situation to the point where it could be life threatening. To be fair to the doctor, he did say I could try going to A and E, but it was more of a suggestion than something I needed to do.

I did not realise the risk I was taking by waiting, and lo and behold on day four I went into hospital with another section of placenta and was incredibly “lucky” that I was in hospital because when I went to the toilet, I began haemorrhaging and, before I knew it, I was shaking on a trolley with doctors pushing needles into my arm and an emergency operation ensued. It’s amazing what you remember when you go into shock, I remember the dingy hospital lights blaring at me and the doctors voice which seemed to fade into the background of the commotion. He told me “everything will be fine, you are in the right place” and I remember picturing my newly born son and thinking that I didn’t have time for this, I needed and desperately wanted to be with him. I couldn’t understand why it was happening and I felt frustrated that I’d made it clear that there was a problem before, why had no one really listened?

The significance of my body waiting for the exact moment I could get help quickly was not lost on me; I was very lucky to be in hospital at the time it happened. The trauma of this, of course, could have perhaps been avoided if I had been investigated seriously with my concerns. I kept seeing a different doctor every time. They could still see on their records that I had been in more than once and could have contacted the A and E department for their advice in this situation or whether to send me across—hindsight is a wonderful thing. I got a “sorry” from the hospital staff as I was waiting for the operation, but it was over my proceeding journey with endometriosis that I would experience time and time again how women are not heard or feel patronised by some gynaecologists who talk as if they know more about a woman’s body through the textbooks and classes they attend than the women themselves living in them.

You may feel this is a little harsh, and of course I am not talking about the experiences of all women in medical settings, but this is how I’ve felt many times. It seems I am far from alone. I wondered if I was going crazy and if it was just me that felt that there was an injustice in how I was being dealt with. It felt like there were still hints in the medical setting of a historical era of eye watering ways in which women have been dealt with by doctors. The diagnosis of “hysteria” and “it’s all in your head.” Science writer Abby Norman, who also has endometriosis, explains her own experience and research on this in her book, Ask Me About My Uterus. (You will find my thoughts on how we might have been taken away from some of our feminine wisdom in this book.)

I would later know all of this trauma to be the beginning of some beautiful discoveries, and the path towards a deeper calling.

It was after the emergency surgery and a few months of breastfeeding that my “period” returned. There was no blood, only extreme pain in my abdomen that had me in A and E. I did not know it was my period at the time, I had no idea what was wrong, and I was sent home with opiate painkillers as many women with endometriosis are.

This type of painkiller can cause constipation, which could potentially make the discomfort worse than it already is. I realised that it was happening every four weeks, so I felt it had to be related to my period, even though the pain was also around my stomach and navel area too and it continued for several months. What ensued were many hospital visits and anxiety around what was happening in my body, whilst desperately trying to look after a new baby and a one-year-old. I never really asked for help. Like many women, I felt I should be able to get on with things; after all, that’s what women do, right?

That’s what I’d witnessed many women in my life doing. I felt I needed to be strong, or what I assumed was strength at the time. Of course, strength would have been to show my vulnerability and ask for help. We must speak out, the large numbers of us who have endo (or other female conditions or traumas); silence does not beget change or awareness. By speaking out, we allow others to do the same, and when women gather in support, we can be a powerful force. It’s hard to heal in your own silence.  

With no bleeding and just extreme pain in my abdomen, I believed that after surgery to remove my placenta, my womb may have had some adhesions, resulting in a condition known as Asherman’s syndrome, although this was never confirmed.

If I was bleeding, it wasn’t able to leave my body and so I feel it could have caused retrograde menstruation which could have added to my already suspected endometriosis.

The theory of retrograde menstruation leading possibly to endometriosis was acknowledged by Dr. Sampson. The blood containing endometrial cells travels backwards into the fallopian tubes and pelvic area and stays there as a lesion (displaced/abnormal tissue). This is thought, however, to happen with many women when menstruating and whereas the immune system of many women’s bodies clears it up, for some women, the cells remain outside the pelvis, and the hormonally sensitive tissue that is not where it should be follows the same cycle as the womb lining at menstruation. Bleeding into the pelvis when a woman menstruates, resulting in inflammation and pain.

However, retrograde menstruation does not explain why endometriosis lesions have been found in female foetuses. Or why some teenage girls have endometriosis (I will begin to refer intermittently to this condition as “endo”) in their younger years or from the first cycle. Or that it has been found rarely in men. Also, the endo cells are said to be “like” the ones in the lining of the womb that react in the same way as the cells in the womb, building up and breaking down at menstruation.

It may be the case that for some women they are prone due to a number of factors to develop the disease later in life. I also had a tilted womb and found both of my boys breech until towards the end with both of my pregnancies. Luckily, my first turned eventually, but with my second, I was left with the option of ECV (manual turning of the baby) or C-section, and neither of those appealed to me. The shape of my pelvis and womb whilst menstruating, I believe, may have played a part in my endo. There were many other factors that I would later uncover that I feel added to menstrual pain.

For around seven months, I was in and out of hospital being prescribed painkillers and told to wait for my gynaecologist appointment at the BSGE centre (British Society for Gynaecological Endoscopy), or what are known as specialist endometriosis centres. There are a few of these dotted around the country. Once I was finally seen by an endo specialist, they could not see anything on the scan they provided and so I was referred to a gastroenterologist to check for a bowel problem before I would be offered the possibility of a laparoscopy (keyhole surgery). The trouble is, a scan can miss endo, which is why laparoscopy is the only way to diagnose it properly.

I was angry and frustrated. The pattern was around every four weeks and a specialist centre was sending me to a gastroenterologist, but I had classic endo symptoms and had it suspected prior to my births with an MRI that showed what looked like a large lesion in the pouch of douglas, the area between the rectum and the posterior wall of the womb.

This unfortunately is very common for women with endo, and diagnosis can take seven to ten years on average. A fire of injustice began to simmer within me; how could this be?

The more I discovered and experienced myself, the angrier I became. Why was women’s healthcare being failed in so many ways? Not just for endo sufferers. I could write many books on women’s health experiences and struggles to get necessary support, or to just be heard. This is also where it becomes important to empower and support ourselves, too.

In this day and age, how can we have a disease that affects one in ten women and has the potential to have such a dire consequence on the quality of life of those afflicted be so poorly researched and understood? Why had so few people heard of it?

If it affected both sexes, such as other diseases like Asthma or Crohn’s or Celiac disease, would people know more about it? It still astonishes me how the public cannot know about such a devastating disease and the struggle women with endo go through to be heard or supported, let alone receive appropriate care. I realise that I speak from a position of privilege in the UK as there are some countries where the level of care for endometriosis is much worse or women cannot afford to pay for treatment. Endometriosis needs worldwide support.

I’ve heard enough stories from other women who also have been disregarded with their pain, made to feel like they are just ‘’drama queens’’ because, hey, it can’t really be that bad. There are so many women with endo who have stories about extreme pain and being sent home with advice to take a couple of paracetamols and use a hot water bottle, their doctors seriously displaying a lack of understanding about the toll endo can take. Never mind the many younger women who have been told they are ‘’too young’’ to have endo. Some of the suffering comes from a lack of care, understanding or awareness of how debilitating it can be. You cannot see endo and scar tissue and the damage it is causing internally and pain is subjective so outwardly you can look fine. Women with endo are used to putting on a brave face when they are experiencing pain, possibly because it is so misunderstood that sometimes we give up trying to explain it. With more awareness and understanding this can change.       

It is incredibly frustrating when little is known about the true cause of a disease. I am far from alone in feeling this. The science is not there yet as to why women develop endometriosis, although there are theories and speculations, one of which I’ve outlined. What we do know for certain is that the lesions are oestrogen sensitive.

The truth is there are so many questions with so few answers, there has not been the investment, interest or research into the disease from a medical point of view, this is a serious concern when you think about the research gone into other diseases. Trust me when I say, mine is just one story from many similar stories from other women with the disease and we are beginning to speak out. This book is about what I’ve discovered about it from an experiential perspective.

Doctors hand out various prescriptions, sometimes giving the impression that they are the authority on the best path for you. But if it’s regarding menstrual conditions, it’s always worth doing your own research and asking questions so you play a part in the decisions. Be assertive with what you feel you need but know that there are many women having success reducing or eliminating symptoms through holistic approaches too, this goes for all reproductive conditions. You may want or need both but make sure you are presented with all the risks and benefits to make an informed choice, whatever route you decide to take. Many doctors don’t have the time that most of their patients need, and I do not envy the stress of their workloads. Most of them are genuinely trying to help in the way they know how, but the truth is, no one understands endo more than the women afflicted, especially when symptoms don’t fall under the “classic symptoms’’.

Endometriosis can affect far more than the reproductive system; it has an impact on other systems like the nervous and immune systems. It has also been found in the lungs, nose and even the brain, although this is rare. But women do lose organs to endo. There is even more of a struggle in diagnosis for those who have it in other areas. I suspected endo in the thoracic area. I feel blessed that the disease didn’t cause me too much difficulty in my younger years and to those whom it is affecting, there is hope and ways to support yourself that you may not have considered—this applies to many menstrual conditions too, as my experiences showed me.

My hormones were imbalanced, and my body began reacting to the disease in other ways. My immune system was low, and I ended up poorly with pneumonia (possibly related to suspected endo in the thoracic area) and back in hospital. My body couldn’t cope with the stress of looking after two young children and a disease that was rapidly raging on the inside. It was a call from my body—if I wasn’t going to slow down, I would be made to.

My heart goes out to any women suffering with illness whilst looking after children.  I knew my body was desperately crying out for rest and a chance to rebalance and recover. The truth is, I could have put them in childcare at that point and focused on getting better, but I felt guilty and very sad that I might miss the baby phase. I was also lucky to even have it as an option in the first place. It was by far the most challenging and difficult year of my life. My body desperately needed to stop and recover, but there was no time; I had to keep going. Eventually I had no choice but to find another way. I was surviving and pushing through as much as I could, but I was becoming very unwell.

I tried desperately to get back to an endo centre after they sent me to a gastroenterologist to let them know I was certain I had endo or Asherman’s as a result of what happened, or that it had aggravated existing disease. Unfortunately, it would take far too long, as they have long wait lists. And so, I ended up going back to the hospital that originally referred me to the specialist centre, sigh.

I managed to get a laparoscopy booked in for a few weeks after I had my consultation, and surprise, they found endo. The surgery was not carried out by an excision specialist, which is what I wanted. There is a difference between ablation (burning the surface whilst possibly leaving deeper disease) and excision (complete excision of disease tissue). Also, with ablation, the tissue is destroyed and so it cannot be sent to pathology to check on cancerous possibilities.

There are only a number of gynaecologists who are qualified in endometriosis advanced excision surgery in the UK and in other countries, so women might be at risk of receiving inadequate treatment, with disease left behind. Not the fault of the gynaecologist; they may not have been trained in the techniques and skills necessary for advanced disease. An excision specialist knows where and what to look for and will often work in a multidisciplinary team with a bowel or bladder surgeon. They will aim to eradicate deeper disease. Some endo lesions can unfortunately be very difficult to spot.

However, I was very grateful for that surgery as I bled again two2 weeks later for the first time in months, and the levels of pain had reduced. It gave me the respite I needed and some time to take charge of my health again.

Interestingly, on the follow-up appointment post-surgery, I was told that it was a coincidence I had bled again after the surgery. Hmmm, I thought, it may be because hospitals do not like to admit to Asherman’s cases as it can be the outcome of surgery; it is not a disease of itself. I had already signed a form to accept the risk and possibility of Asherman’s before the surgery, so it was not this in itself that was frustrating. It just seemed to be discounted immediately when I mentioned it. I had also read that Asherman’s could be more likely following birth if women have had a ‘D and C’ for a retained placenta. This is because the womb is not yet healed properly. Perfectly logical, it was confusing because I couldn’t believe how quickly it was discounted when I expressed my concerns that this is what could have been causing all the pain with no bleeding. It was the fact that it was dismissed out of hand with no investigation, and at this stage, I didn’t have much energy to argue. I only wanted to get better so that I could look after my very young children.  I will never know if this was truly the case.

There were many GPs and endo specialists who recommended the pill to me. It has helped with the management of symptoms for some women, providing relief, but others find they are eventually in worse pain or experience side effects, and it does not cure the disease. I was not looking for a suppression of symptoms. I also find it “intriguing” that women who only ovulate once a month are predominantly taking hormonal contraception, with many different options continually presenting themselves. Where are all the options regarding hormonal contraception for men? Ahem.

I had a strong intuitive sense that this was not the way forward that I wanted to take. I was not comfortable altering my already imbalanced hormonal system in this way. I felt that if my body was imbalanced or dis-eased, then I wanted to find a way to put the “ease” back in. I wanted to return to health and thought that there must be a way of using other natural methods to allow my body to restore itself. I wasn’t looking for a magic pill, I wanted to return my body and hormones back to a state of balance so that it could be in a stronger position to heal itself, or at least reduce inflammation and other symptoms.

Again, upon reflection, this was all part of my journey. I could never bring myself to take the pill at any time in my life and I wasn’t sure why I felt so strongly about it, but my intuition said no. I was also a reflexologist at the time and knew there were lots of holistic ways to help myself. I was about to make some beautiful discoveries about menstruation, so this intuitive sense seems very “coincidental” considering what later transpired.

I was also, however, very aware that the D and C for my retained placenta had caused a lot of damage in my pelvic area and that I would not rule out another surgery. I was very clear that if I ever needed surgery again that I would have an endo surgeon I could trust and who would be qualified in excision surgery.

I began my research and decided to have a private consultation with a surgeon in Birmingham who was renowned for his expertise but also for listening to his patients.

His clinic had a good atmosphere, and I felt at ease upon meeting my surgeon. He had a warm and welcoming smile and a presence or air about him that I instinctively felt trusting towards. Even my husband commented on his presence without me saying anything about how I felt, which made me smile. For the first time, I felt as if I had been listened to with empathy. He had the same frustration I did, having heard many times from other women how difficult it was to get diagnosed and receive appropriate care. I knew straight away that if I needed surgery again, it would be with him. I was aware that the surgery I had received previously would not have removed all my disease and that the surgeon had not checked the bowel and all other areas that endometriosis can hide. He had also ablated and not excised.

We made the decision that we would leave it a few months before deciding whether to go ahead with excision surgery. This was because my symptoms had improved from the previous laparoscopy. And now that I was bleeding again and had some lesions destroyed, I had some relief. I didn’t want surgery again at that time. I wanted to see what I could do to improve any lingering symptoms or stop the development of any further disease.

Every time we met for our follow-up appointments, I delayed, as my symptoms had reduced drastically after following the methods and insights laid out in this book. But I still had the sense that he was at some point going to help me or be part of my unfolding story. I also had a fear that I would end up in a situation like before, not getting the treatment I needed. I was still anxious after not being heard so many times. My body was still on high alert after so much trauma. I did not know then what I know now.

The support began as I ventured on my quest to return my health on all levels. I was about to unpeel so much wisdom that I had no idea I could access. If you do suffer from endometriosis or any reproductive issues, or if you are just looking to connect to your body with wisdom and love through self-care, my book offers a truly holistic and empowering feminine path. I hope the methods and insights I discovered could give you the same joy, wisdom, feminine reconnection and respite they gave me.

You can purchase Melanie’s entire story on Amazon.   Or you can email her directly.

*

I want to send a special Thank You out to Melanie for being brave enough to share her personal story, struggle, and victories with us today.  And we wish you all the luck with your book and Journey! ❤

Memo that reads "Tell your story"

And if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

ABC 10 News Interviewed Local EndoWarriors About Lupron Depot

Stillframe from ABC10 story about San Diego Endosisters who speak about about Lupron Depot

Jennifer Kastner of ABC 10 News San Diego reached out to Bloomin’ Uterus to see if we had any of our local Endo Warriors that had treated with Lupron Depot. Several of us had and jumped at the chance to share our experiences on the drug.

Five EndoSisters, Jennifer, and her cameraman Adam met for a two-hour interview one afternoon early this year. It was an incredible experience. We each had the opportunity to share our Endometriosis stories and our experiences on Lupron Depot.

One Sister has chosen not to take Lupron and talked about her battle with physicians to respect that decision.

The 2-hour Q&A session was paired down to a 5-minute investigative report. Jennifer did a wonderful job of fitting in a bit of our stories, as well as covering the side effects of Lupron, and the havoc it can cause.

If you’d like to watch the interview and read the more in-depth written report, please check out ABC 10 News’ page.

I’m grateful to Jennifer and Adam for reaching out to us and dedicating their afternoon to our interviews and for their weeks of investigative research. And I’m so proud of, and equally grateful to, our EndoWarriors who were able to join me that day: Melinda, Amanda, Brooklyn, and Linda – I love you. And am so pleased that you’re a part of my life.

Thank you for all that you do. Together we can achieve great things!

My 4th Endo Excision Surgery

"Uterus & Guts," created by Ivy Denton
@deathwindchimes 

Before I get started, let me explain the image above. A talented artist by the name of Ivy Denton created it for me (they also created the EndoGuy and PoopChuteSnakie you’ll see below). They’re taking commissions if you’re interested in throwing ideas their way! “What is it,” you may be asking yourself. It’s a whimsical interpretation of my insides: a uterus with two cervix, no fallopian tubes (hence the band-aids and floating ovaries), and it’s accompanied by it’s new buddy: an intestine missing some pieces. I think it’s adorable! Thanks, Ivy!!


On with the good stuff! If you didn’t already know, back in July 2018 during an excision surgery Dr. Kurtulus discovered a pair of Endo lesions on my small intestine . He brought in a colo-rectal surgeon, Dr. Schultzel, to look at it and decide if we could remove it then. Unfortunately, it was deemed too deep and risky without a proper bowel prep and a future resection would take place.

On November 26, 2018, I had a tag-team surgery for my Endometriosis. Dr. Mel Kurtulus once again performed my excision surgery and Dr. Matthew Schultzel performed my bowel resection. This took place just four months after my last excision surgery. The procedure lasted about four hours and went without a hitch. I remained in the luxury resort…I mean the Prebys Cardiovascular Institute at Scripps Memorial Hospital for three nights/four days while I recovered.


Toilet with toilet paper

The Bowel Prep

This was my very first bowel prep. Ever. And I was terrified of so many things. I’d heard horror stories about the taste of the prep, and equally horrifying tales of the aftermath.

I was prescribed Suprep, which of course my insurance refused to cover. If that ever happens to you, get a manufacturer’s coupon off of their website and bring it to your pharmacist. It certainly knocked a bit off the price for me!

Honestly, it didn’t taste that awful…kind of like a salty grape-flavored 7-up. But ugh it was still rough to get down.

Lisa Howard making a face at the first sip of SuPrep

35 minutes after I downed my first big dose of Suprep…and the torrential downpour had begun. Over the next 2 hours, I pooped a total of 19 times (I’m sparing you the details, but kept a detailed log; no pun intended). Most of it was liquid and sometimes I couldn’t even leave the toilet in between craziness.

My colo-rectal surgeon also had me on a regimen of ClearFast, to help not only keep me hydrated during the process but to make for a faster/easier recovery after surgery.

Then at 10pm, I took my 2nd dose of Suprep. It took about 30 minutes to take effect and over the next hour I poo’d liquid 13 times. At 11:30, I dragged myself to bed. At 4:00am, I woke up to take my prescribed ClearFast and learned that Suprep was still in command. I pooped again 5 times over the next hour. And when we got to the hospital, I poo’d liquid again twice before surgery (once in my surgery cap ‘n gown)! I was scared that the clear liquid-pooing would keep them from performing my surgery since I was obviously still voiding. Nope! The show must go on!

Doodle of bowels

The Bowel Resection

After a few months of working with my insurance and getting Dr. Schultzel specially-approved for my surgery (even before he was in my insurance network), the day was here! I endured the prep and I was ready!

My Mum came with me to the hospital and my husband had to work, we met the smiling faces of hospital staff who have remembered us from previous surgeries, AND I had my favorite nurse help me during pre-op setup. Fist bumps, hugs, and cheek-kisses were exchanged all around the pre-op area as they wheeled me out of the room. Have I mentioned how much I love this hospital? They’re like family!

I digress: back to the surgery!

Previously, the endo was spotted on my terminal ileum, which is the area where the small intestine meets your large intestine ( X marks the spot on the picture below). At my request, my colo-rectal surgeon was also going to remove my appendix due to the close-proximity of Endo and the chance that it, too, may be affected. He was also going to inspect and possibly remove any portion of my large intestine that may also be Endo-laden (see the red square below). He ended up doing JUST that.

Diagram showing the portion of bowels removed during surgery

There were a total of five incisions (1 on my right side, 3 on the left, and a larger one at my bellybutton). I was given a TAP block injection while I was under anesthesia to help with my post-op pain. And in went the camera…

Dr. Schultzel spotted the Endo lesion on my terminal ileum right away, then saw more lesions on my cecum (kind of the bottom right portion of the large intestine) and near my appendix. He also saw a lot of pelvic Endometriosis, but knew Dr. Kurtulus would be handling those nasty buggers.

This is where things get exciting! When I learned I’d have my guts stapled together, I envisioned a big ol’ heavy-duty office stapler. BUT a surgical stapler, especially a robotic stapler, is waaaay cooler! It sort of cuts and seals at the same time with a row of tiny little staples. If you’re familiar with sewing, imagine a serger machine. Zip & slice! One neat little package. I have no way of knowing how many staples still reside in my guts, but I imagine a lot of little teeny ones!

If you don’t want to imagine, you don’t have to: here’s a Youtube video (not mine) of another surgeon using a robotic stapler during a surgery (fast forward to the 0:44-second mark) https://www.youtube.com/watch?v=wSxiTZwdUFA

So, Dr. Schultzel removed my appendix, my cecum, a portion of my large intestine, my terminal ileum, and small intestine. All in all, it was a little over 7 inches (18 cm) of my guts. The stapler system was used in all areas where my guts were removed.

My small intestine was reconnected to my newly-constructed large intestine and that connection now lives over my liver, near the right of my bellybutton. Then he wrapped that little newly-formed gut-intersection in a flap of my omentum (a fancy term for a fatty, fleshy organ that sits near the stomach and is kind of like a draped apron) – imagine a little poopchute burrito or taco near my bellybutton. 🙂

Dr. Shultzel then passed the controls of the Da Vinci over to Dr. Kurtulus (see The Endo Excision below). Once Dr. K finished removing any Endo and adhesions, Dr. Schultzel continued to work his magic. He pulled out all of the cut-out bits through a hollow tube placed in my bellybutton incision (called an Alexis wound retractor), stitched, and glued me up.

Alexis Wound Retractor
Alexis Wound Retractor; photo courtesy of Applied Medical

My incisions are definitely larger than surgeries-past, but so much more was done. After reading about the Alexis Wound Retractor, now I understand why my bellybutton incision is roughly 2 inches long!


Doodle of Endo

The Endo Excision

Awww, Endometriosis. It loves me so much it keeps coming back to visit. With it being just four months since my July wide-margin excision surgery, we weren’t expecting to find much, if any. Dr. Kurtulus was there to inspect under the hood just to be safe while I was already under the knife for my bowel resection. A wonderfully, perfect coordinated effort. Boy, were we in for a surprise.

He found newly-formed adhesions on my left side, which involved my left ovary and abdominal wall, more along my peritoneum lining, as well as new adhesions that had begun to smash my bladder back down. He also found Endometriosis lesions “all throughout the pelvis.” They had grown back on my right ovary, my right ovarian fossa (where the ovary hangs out), my Pouch of Douglas, the uterosacral ligaments, near my bladder, my left ovary, and the left adnexa. And, as is customary, an Endometrioma (the chocolate cyst) had formed again on my left ovary. Always my left ovary!!! Even after just four months…*sigh* But…”the rest of the pelvis and abdomen looked clear of endometriosis lesions.” Yay!

He removed all of my Endometriosis lesions with wide-margin excision. He also removed the Endometrioma (he saved my left ovary) and he cut away all of the adhesions that had formed. He also, as is our custom, performed a cystoscopy to look inside my bladder for any Endo or abnormalities: pink, healthy, and all normal! And for the first time in a few surgeries: no Endo on or around my ureters!

Everything that was removed: the gut-bits, the Endo lesions, the adhesions, and Endometrioma were all sent off to pathology. This was the longest pathology report I’ve ever received: a total of seven pages! And it confirmed the presence of microscopic Endometriosis on my appendix. I’m SO grateful the surgeons and insurance all agreed to preventatively remove it.


Photo of Lisa Howard recovering in hospital

The Recovery

My Mum, husband, and friends who saw me after surgery said it appeared to be my easiest one yet, in terms of how I felt during recovery. I, on the other hand, felt it was my hardest.

Four days in the hospital: my Mum stayed with me every day while I was there (I love you, Mum!!), my husband would visit after work, both of my surgeons visited as often as the could, and the nursing staff were freakin’ amazing!

During my stay, I was given a cocktail of Tylenol, Gadapentin, and Celebrex to manage my pain. I was offered Tramadol (100mg), but didn’t want it since I already don’t like taking my 50mg Trammy at home. But the cocktail did well and pain was minimal. If memory serves me correctly, I threw up a few times the evening of my surgery (likely related to anesthesia) and became intimately familiar with the hospital-issued throw-up bags.

My surgeon and hospital staff encouraged me to get up and walk the halls as often as I could muster. Not only would this help keep me limber and young (Ha!), but it would help get my bowels workin’ and tootin’. Those long walks around the 5th Floor wing were fun: I stumbled across my surgeon on one of those walks, as well as my best friend, Rosie, and my husband escorted me down the halls a time or two!

I remained on a liquid diet until I farted…late the evening on my third day. Very long days of nothing but soup and jello. But that fart? Which was AWESOME because not only was my Mum’s face epic and unforgettable when I tooted, but all of the nurses were just as excited as we were, AND I was served a small meal of soft foods (diced chicken breast never tasted SO good!). Mum and I even had a laugh keepin’ track.

Hospital chart showing I farted 3 times since 11/28/18

The next late-morning, I was able to poop (if you can call it that…I’ll spare you the details, but I hope my Mum is laughing when she reads this) and Iwas merrily discharged on Thursday, November 29, 2018.

There were bouts of the dreaded shoulder-gas pain, both at the hospital and at home. A few of them were scream-inducing memorable. And those are the worst moments I remember. Sneezes, coughs, and vomiting were equally unpleasant. As well as trying to get, and remain, comfortable for sleeping. When I got home, I mostly remained on my Tylenol pain management, with the exception of 1 Naproxen Sodium and Two Tramadol through the duration of 2018.

I was off of work for six weeks. And got a little better every day. I kept a running tally of milestones:

  • 11/28/18: Released from hospital and finally at home
  • 12/4/18: I can raise my arms above my head without feeling like I”m pulling my guts out of my incisions
  • 12/8/18: First sneeze since surgery: one sneeze, two sneezes, three sneezes!! SOOO PAINFUL!
  • 12/14/18: I can blow my nose without my guts hurting!
  • 12/17/18: I still can’t bend down and wash my feet, and it’s been 3 weeks since surgery…so I got a pedicure at a local salon. There was some disgusting dead skin!
  • 12/19/18: If I use the handrails, I can walk up the stairs like a normal! Slowly, but normal!
  • 12/20/18: I walked the entire mobile home park! It took over half an hour, but I did it!
  • 12/27/18: I drove!!!
  • 12/29/18: I lasted 10 days without needing to take a pain pill!
  • 1/3/19: I laid down on my side for just a few minutes! Soon: no more back-sleeping!
  • 1/7/19: I’m back to work!!!
  • 1/9/19: I can lay down on my stomach! Albeit for just a few minutes. But still!!
  • 1/17/19: as a fun note: bending or squatting or sitting for long periods still becomes very uncomfortable. So…I haven’t shaved my legs since before 11/26! Bwuahaha.

I cannot tell you how much better I feel since before my surgery. I haven’t had any of my pre-surgery pain. Not one! My bowel movements are (99.9% of the time) pain-free. The constant pain on the right and left sides of my lower abdomen are GONE. My December period was light and cramp-controlled with Ibuprofen. My back pain is gone. And I poop ALL the time.

And…I’m a pooping machine! I compared the first week of November poops to my January poops, both the frequency and the pain levels. My jaw hit the floor:

Chart comparing bowel movements and pain between November and January

I now eat six small meals a day, instead of three large ones, to accommodate my new bowels. I also have severely restricted my alcohol intake. Where before I could enjoy 2 or 3 beers in a sitting, I can now only have one. Same goes for wine or cocktails. More than that and I’ve noticed I’m severely dehydrated and my gut’s not happy for days. So, I’ve become the ultimate cheap date: appetizer menu and one drink. And it’s been a marvelous trade-off.

I’m super grateful to my Mum for being with me for a week while I recovered. There’s just something so special about the healing energy of a Mum. And to my friends who came to take care of me after Mum left: thank you. ❤


Dollar signs

The Bills!

Nobody’s favorite part…the money!! This has been my most costly surgery to date; not only because of the two surgeons involved, but the hospital stay after surgery! And my bills are still rolling in:

$224,476.41Hospital Facility Bill Insurance paid per contract
$1,687Endo Excision Surgeon Bill Insurance paid per contract
$2,082.19Pathologist Bill Insurance paid per contract
$3,416Colo-rectal Surgeon Bill
Insurance paid per contract
$2,800AnesthesiologistInsurance paid per contract
$683Asst Surgeon: Excision BillInsurance paid per contract
$285Asst Surgeon: Colo-rectal BillInsurance paid per contract
$2,250My co-payI paid in full
$235,429.60Total(updated 4/4/19)

Camera

Surgery Photos

Before I share all of the surgery and recovery photos, I wanted to share the photo I found the most amazing.

Back in July, Dr. K took a photo of my bowel with the 2 pink & red Endo lesions. In November, those same splotches had turned BLACK. In a matter of four months, the disease altered that much. I know that lesions come in a broad range of colors…but I didn’t realize they changed color or shape once they were formed! Nor so quickly! So, we’ll start with that! Be flabbergasted with me 🙂

Comparison photos of July 2018 and November 2018 Endo lesions on bowel

But here are the rest of my surgery photos I received at my post-op appointments (click on them to enlarge):


Camera

Recovery Photos

Mum took a lot of photos while we were in the hospital (but funnily enough…none of her!). Here’s the Hospital Shenanigans:

And here’s a slideshow of my incisions from Day One to Week Seven!

If you’ve made it ALL the way to the end of today’s blog entry, you have my applause!

I’m eternally grateful to both my skilled surgeons and their staff; the insurance crew who expedited the approvals through the system; my Mum, my husband, my Seester, and my friends for not only helping me, but putting up with my grumpy-recovery BS; as well as my employers and my co-workers for allowing me to do this second surgery this year. 2018 was one hell of a ride. And this surgery could not have gone any better without each of you.

Let’s hope there’s no need for future surgeries!

(Updated May 17, 2019)


Share Your Story: Mummy

"I would lay on the bathroom floor just to get relief" quote and a toilet with toilet paper

“Mummy” was 29 when she was diagnosed with Endometriosis.  Now 32, she shares her journey with us.  Mummy lives on the island of Antigua, and faces the struggles of limited options when it comes to healthcare.

Mummy’s Journey: I started getting horrible pains when I was around 25 years old and I did not realize what it was because I always took Advil painkillers.  They did help but I realize after my period was finished I was still feeling pain and my legs, I couldn’t walk, and just feel too tired.

You can say I visited all the Doctors mentioned in your blog. Dr. Roberts was the one who told me I might have endo. I did not know anything about the disease she said to do some research; I did. I felt like she was not helping me just putting me on contraceptives and I have to spend a lot of money every time I visited her. She would perform ultrasounds every time I visit which was pretty often and said she had not seen any cyst or fibroid at the time. I decided to stop seeing her because I felt that she was not understanding to my pain and so I traveled overseas to another Caribbean island where I saw a Doc.

He examined me and I did a few tests. I had a cyst on my left ovary. I could not stay on the island as I lived and work in Antigua. The Doc told me they had to monitor it (cyst) for three months.  Of course, I couldn’t stay so I came back to Antigua.

I saw Dr. Wynter and Dr. Mansoor I felt that they could not help me.

One day a friend of mine told me that Dr. Dean Martin was on ABS talking about the Endo.  I decided I was going to make an appointment to see him, in which I did and he told me after examining me with the pains I had, a laparoscopy was the best option to see what’s happening.

I did the surgery (four hours) of course he told me I have stage four endometriosis and a cyst that had ruptured.

I was placed on sick leave after recovery the pain definitely did not go away I had longer periods and worst pain the only good the surgery did for me is that I could have sex without feeling so much pain during or after sex. I felt like I paid a lot of money and was still in so much pain.  My job wrote me a letter to say I am always sick and they would reconsider my employment with them because I would always call sick. I was working with this prominent Security Firm and even though I worked there for 8 years and informed my boss personally about my condition it did not matter to him.

I would overdose on the painkillers so that I would not have to deal with the pain by falling asleep. My doctor told me I should not wait to have children because of the endo, I just felt so lost and I would just stay in my house and I did not want to come out to socialize with people or anyone. I would lay on my bathroom cold floor just to get relief. Somedays I feel like ending my life until I met this wonderful herbal doctor, Dr. Elra, right here in Antigua. I was feeling so much pain I end up at ER and my friend told me about him and I went and visited him he is amazing.  God is truly awesome.  Diet, plus colon cleanse and medicine healed me less than a month. I do not feel the pain, I am totally pain-free. It’s expensive, but Dr. Elra is the best.

**

I want to send a special Thank You out to Mummy for being brave enough to share her personal story, struggle, and victories with us today.  And I am so grateful you were able to find Dr. Elra and relief!  We hope it continues for you! ❤ And your quote, “I had to lay on the bathroom floor just to get relief,” struck me so hard – I think each one of us reading your story today have been there. Thank you for sharing.

download

And if YOU would like to share your story, please submit it.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Share Your Story: Mollie

Quote: Her doctor told her she had sorted it out. That it was done. The end was gone!  But when she complained of ongoing pain her doctor said the pain was all in her head and she had some type of PTSD

Mollie was diagnosed with Endometriosis when she was 20.  Now a year later, she shares her journey with us.

Mollie’s Journey: It all seems full circle to me after about 7 years.

At about 13 is when I got my first period and my symptoms began to start at 14 from what I can remember. What I do remember vividly is the pain, daily. My mother thought I was just trying to skip school because the only thing I could explain to her was that my tummy hurt. Any mother would think that a 14-year-old that complains of a “tummy ache” almost everyday is just trying to get out of class so I can’t blame her for any of that.

She took me to a doctor after some time to see if I had an dietary issues and the doctor concluded I was lactose-intolerant. I tried that for a couple of years, of course never worked. My mom figured maybe they were my cramps beginning to start so at the ripe age of 14, I went and got birth control.

At 16, I ran to my sister’s room to tell her that I was really starting to be in pain when I went to the bathroom. She told me that was normal, I probably had gotten a UTI and that she had one before, it was no problem. Pretty soon I was getting UTI’s and yeast infections monthly or so I thought. I went to my primary care doctor, they prescribed me antibiotics. Still happened monthly.

I then went went to my gynecologist, she decided to put me on a different BC. Didn’t work. I explained to her how bad my cramps were getting even in between my period. Cue ultrasounds for cysts! Nothing showed up. Through 4 doctors, painful examinations, and countless “it’s normal for a girl your age”s, I kept going, hopelessly.

At 18, I went to college that came with new doctors and questions. By this time I had been “diagnosed” with chronic UTI’s. Finally, I went home over a weekend during my junior year where I met a new doctor. She asked me if I had ever hear of Endo. It was the first time the word ever left my mouth and now it’s part of my everyday vocabulary. I will never forget that meeting. She spat out all the worst case scenarios that happen to women with this disorder.

The gynecologist I had seen since I was 14 decided to do my laparoscopy before I could even call my mom. I told them I needed to talk to my parents. I got a call the next day that my surgery was scheduled for 2 weeks later! I have midterms?! Of course the first thing that crossed my mind because I had no idea what was going on. Google was my friend at the time and oh how scared I got in a short amount of time. I told my dad who consulted friends to find me a second opinion.

The next doctor confirmed and proceeded with my surgery and did a Endometrial ablation. Surprise surprise! I was back almost every week following the two week mark of my surgery.

This is where I felt crazy. My doctor told me she had sorted it out. That it was done. The endo was gone. The pain is in my head because I had some sort of PTSD. I told her I was worried about kids. She told me I needed to see a therapist. I told her it feels no different. She told me my body wasn’t “used” to it yet. I was horrified. I left the doctors office wiping tears from my face.

That’s when I found Bloomin’ Uterus and this wonderful support group along with Nancy’s Nook. I decided to schedule an appointment with Dr. Orbuch. She truly has been my angel in the dark and erased my resentment of myself. I cried tears of happiness in her office as she looked over my medical records. She explained to me that my Endo was very much still there and that the ablation had a “plastic melting” type of effect. That my pain was normal. That I need to go see a fertility specialist. That I need ultrasounds and physical therapy.

Most of all she gave me hope.

Two appointments later, I have been officially diagnosed with Endometriosis, Interstitial Cystitis, and Pelvic Floor Dysfunction. I know have excision surgery scheduled for December 11th and couldn’t be happier!!!

Words of Advice:  Trust yourself and your body. You know it better than anyone else. There will be many doctors, family, friends, and strangers that try to downplay everything you are feeling but you are a warrior.

The Last Word:: Most people will say I am too young to be vulnerable on social media talking about the female anatomy and to be in a support group but I think that is where my strength comes from. If anyone at all needs to talk to someone, I am always here!

If you would like to email Mollie, please feel free to.

I want to send a special Thank You out to Mollie for being brave enough to share her personal story, struggle, and victories with us today.  We are all wishing you the best with your upcoming surgery!  And please let us know if you need ANYTHING during your recovery ❤

download

And if YOU would like to share your story,please do so!  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Share Your Story: Diane

Tattoo that reads "Start Somewhere"

Diane shares her Endometriosis journey with us today.  And she’d like to remind us all when life hits us too hard and we’re stuck or immobile…we have to start somewhere. One step at a time.

Diane’s Journey:  So, I’m officially diagnosed with chronic pelvic pain, recurrent peritoneal cysts, and precancerous cervical cells. I did have an exploratory lap in 2016, to remove suspected ovarian cysts. They turned out to be peritoneal, and I also had “extensive adhesive scar tissue”. Endometriosis was added to my records at that point, but I was seen at a teaching hospital. The residents that saw me and performed my surgery never sat down and discussed what they found.

I went back to work, happily unaware. I thought since the cysts and adhesions we’re gone, my pelvic pain was through. For context, I work as a CNA. 8 hours on my feet running from room to room and lifting human beings bigger than me. It took two weeks back to realize I was mistaken.

So, back at home, trying to focus on my kids, home, and health. In between the year and a half of appointments with residents, different ones with different opinions each time, I fell into a good old fashioned depressive episode. I hurt all the time, I was trying to take care of two special needs children (my daughter has ADHD, severe anxiety, and a fine motor skills delay, and my son has cerebral palsy), trying to keep up with the housework, and missing the adult socialization and feeling like I actually contributed to society.
I started working with a counselor after being diagnosed with adult ADHD and major depressive disorder. In the middle of all this, I had an abnormal pap. Went back for the colposcopy, thinking nothing of it. Not my first rodeo and usually the colposcopy came back negative. This time it didn’t. One LEEP procedure later and I was being referred to a new gynecologist for a hysterectomy consult.

I now know that the hysterectomy won’t cure my endometriosis, but it will stop the recurrent peritoneal cysts that my new DOC says are fed by my ovaries putting off estrogen. It will also drop my risk of cervical cancer to zero, as the cells are still just on my cervix.

I’m scheduled for next month. I’m having a total abdominal (darn scar tissue, again) with removal also of my ovaries and fallopian tubes. I will be in menopause at 34 years old.
I am also working through a not quite midlife career change. I’m going back to school to be a special education teacher.

So, endometriosis and related conditions have changed my course, but they’ve also pointed me towards my passion. Don’t get me wrong, I love taking care of people, especially my geriatric patients.

But I’ve worked with special needs kids for years, and now have my own personal experience to bring to the field. Teaching will be a less physical job for me, but I believe a more rewarding one also.

**

If you would like to email Diane, please feel free to do so.

I want to send a special Thank You out to Diane for being brave enough to share her personal story, struggle, and victories with us today.  We are all wishing you the best with your upcoming surgery and recovery! Please keep us posted.

download

And if YOU would like to share your story, you can do so.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.