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!!!

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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 

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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.

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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.

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.

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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.

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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: Pam

quote: A hysterectomy doesn't resolve endometriosis.  I guess I was naive in 1999; were the doctors also?

Pam was diagnosed with Endometriosis when she was in her 40s.  Today Pam is 59 years old and shares her story with us.

Pam’s Journey:  Long story short, I have 4 grown children after years of infertility followed by 6 miscarriages. I was diagnosed with endometriosis and opted for partial hysterectomy in 1999 due to the heavy periods. I thought that was that.

Fast forward to September 2018, and last week I had my ovaries and tubes removed. I was shocked to hear I had endometriosis plastering my ovaries to my pelvic wall. Now as I am researching I am reading that it is possible that the undiagnosed leg pain I have been suffering with for over 8 years may also be related!

I am not in the medical field but am pretty savvy, so much it is rare that I go in and am not asked if I am a doctor or nurse. My kids and I have had lots of issues and I have been there with them for every step.

So how could I be so ignorant on this?!!

I have seen every kind of doctor you can imagine. I take an epilepsy drug for bilateral pain on the outsides of both lower legs. The last Doctor said just be happy you have a drug that works and stop looking.

I am praying as I heal from surgery, my pain in my legs will go away.

Words of Advice:  A hysterectomy doesn’t resolve endometriosis. I guess I was naive in 1999; were the doctors also?

The Last Word:: Don’t listen to any doctor that says stop looking! I am going back to every doctor if my pain resolves, after I give GOD all the glory, and telling them it was endometriosis, and don’t forget to ask about that!!!

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

I want to send a special Thank You out to Pam for being brave enough to share her personal story, struggle, and victories with us today.  We are all wishing you the best with your ongoing recovery! And, yes, if your pain doesn’t resolve – keep pushing for answers.  They’re out there somewhere!  And if it DOES resolve…absolutely give God all of the glory.  Please keep us posted.

I am so sorry it took me so long to share your post… and I hope you’re doing well!

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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.

Share Your Story: Ami

Quote: the surgeon said in passing that he removed some endometriosis

Ami was diagnosed with Endometriosis when she was 47 years old.  Now a year later, she shares with us:

Ami’s Journey: One year ago I experienced a worsening pelvic prolapse (following a uterine prolapse years ago) and simultaneous debilitating sciatica. All doctors insisted the two were unrelated. Although muscle atrophy contributed to both. I underwent several months of physical therapy and 2 epidural steroid injections to treat the sciatica and then prolapse repair in December. During that Davinci procedure, the surgeon (said in passing) that he removed some endometriosis. I have recovered well, am stronger than I’ve been in years, but still have sciatic symptoms that seem to be increasing. I am starting to wonder if endometriosis has anything to do with it all. Thank you for your writing. I will bring this up with my gynecologist and ask some questions of the Urogynecologist who did my surgery. Ami

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

I want to send a special Thank You out to Ami for being brave enough to share her personal story, struggle, and victories with us today.  We are all wishing you the best with your ongoing treatment.  And, yes, Endometriosis may very well affect your sciatica or surrounding nerves and muscles.  If you haven’t already found them, we have several blog entries addressing it.  Please let me know if I can help in any way!

I am so sorry it took me so long to share your post… and I hope you’re doing well!

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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.

Share Your Story: Daniela

Quote: I feel hopeless

Daniela was diagnosed with Endometriosis when she was 22 years old.  Two years later, she shares her Endo journey with us.

Daniela’s Journey:  Hi everyone, my name is Daniela and I was raised in a small town near the border in Mexico and I am 24 years old. I had my first period when I was 9 and I remember that day like it was yesterday because it haunts me. I remember the face of my mom and grandma as if I was going to die. My childhood was over at that moment my body started to change drastically.

Since my first period the pain was something unbearable, I remember going to the ER every time I had my period. Nothing helped so when I turned 13 years old my mom decided to take me to a GYN and to our surprise I had a bunch of small cysts in my ovaries which were causing me so much pain. My doctor at that time decided that I was too young for any treatment or surgery and that I could bear with the pain until they were big enough for surgery.

I went on like this for years until finally I went to the right doctor and the minute I said my symptoms he started the paperwork for a laparoscopy. I had 4 cysts, and one “chocolate” cyst in one of my ovaries, and a crazy amount of tissue growing everywhere. After surgery everything went downhill for me, he prescribed me with Depo Provera, the side effects where horrible I had constant migraines and I wasn’t feeling like myself anymore. They stopped the treatment and I went on to continuing birth control pills. They worked!

And I was so happy everything was going great until after 6 months the pain was back and it was worse than ever I could not walk, eat, work, I was miserable.

My last option since I’ve tried everything was Lupron, induced menopause. Bodies react to treatments very different but in my case it was hell, the migraines were back, the pain, the hot flashes and I was emotionally unstable. After almost a year of the treatment I decided to stop, my body needed a break from all the chemicals.

I started on the pill again…

but I feel hopeless,

I feel no one understands what we go through and how exhausting it is to hear doctors tell me to change my career to something easier,

to change my life completely and I get it

but I don’t think I am ready to give up everything yet.

I am running out of options and I don’t know if a second surgery would even help…

Words of Advice for Us:  Don’t give up!! In my own experience, I cope with my pain and anger towards this disease by focusing on my friends, my boyfriend, and my career. I chose I very hard major (Architecture) as I’ve been told by a lot of doctors, but it is the only thing that keeps me going. Find something that motivates you.

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

I want to send a special Thank You out to Daniela for being brave enough to share her personal story, struggle, and victories with us today.  I am sorry to hear your pain has returned.  But, in my non-medical opinion – if you can find a physician to do an excision surgery, a second surgery may help!!  My track record is an excision surgery every two years…If you need anything…ANYTHING…you reach out to me here, hun.

I am so sorry it took me so long to share your post… and I hope you’re doing well!

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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.

Share Your Story: Katie

Quote: Don't give up. You know when something is wrong with your body.

Katie was diagnosed with Endometriosis when she was 19 years old.  Now 21, she shares her Journey with us.

Katie’s Journey:  Symptoms first started when I was 11 – my first ever period was agony. At age 12, I had an ultrasound which showed cysts, this was the first time I heard the word endometriosis. I went home and looked it up and everything seemed to suddenly make sense.

I was 18 by the time I finally got referred to a gynaecologist. In September of 2016, I had my first laparoscopy and got diagnosed with endo!

It was July 2017 when I had the laparoscopy to laser out the endo, however my gynaecologist couldn’t do it as it had grown in difficult places and he didn’t know what he was doing, which is when I got referred to a specialist!

November 2017 I finally had the endo cut out and had the mirena coil put in, so far so good!

A few blips, but that’s to be expected!

Words of Advice for Us:  Don’t give up! You know when something is wrong with your body and do not give up going to different doctors until you find a cause of the pain and find something to try and resolve it! Keep strong 💛

The Last Word:I’m always around to have a chat if anyone would like that 💕

If you would like to email Katie, please feel free to do so.  She also has her own blog.

I want to send a special Thank You out to Katie for being brave enough to share her personal story, struggle, and victories with us today.  And congratulations on your recent engagement! I am so sorry it took me so long to share your post… and I hope you’re doing well!

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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.

Share Your Story: Michelle

Photograph of Michelle and a man in the hospital

Michelle from Virginia was diagnosed with Endometriosis when she was 36.  Now a year later, she shares her Endo story with us.

Michelle’s Journey:  Hi. My name is Michelle. I am sharing this story to help others with endometriosis. I have a very unique story.

In 2003 I came out of the military with a rare bone tumor called fibrous dysplasia. This was and still is in my pelvis. It’s something I went through many years and it took having my third son to put me in a state of barely walking, getting infusions, many rare surgeries at John Hopkins to get the help I needed to walk day-to-day.

In 2012 after having my third son I was having lower back pain and the pain seemed unbearable! Move forward to 2016 after both hip surgeries and pelvis surgeries I was having unbearable pain again and the Hopkins doctors were concerned it became malignant so I had a scan that showed ovarian cyst large enough concerning my pain, and after Christmas I was given an ultrasound and told I had two that seemed like chocolate cysts.

By February and March they did lower scopes since I was having bowel issues too. While that came out fine, I found a doctor that specialized in endometriosis and felt I had it. I knew the pelvis pain wasn’t from fibrous dysplasia and with that condition it made it hard to know exactly how much. I went ahead and scheduled surgery for hysterectomy and removal of cysts. So surgery was supposed to be 4-5 hours and it ended up being 9-10 hours. I had it mid-June. Apparently, I had one of the worst cases they have seen.

All my pre outpatient tests did not show the endometriosis on my intestine, rectum glued to my uterus and a more concerning part deep down in my uterus. I’m 2 weeks post op, stayed in hospital for three days. While I have stitches on my stomach, the inside lower is the concern of healing properly. Post op is up and down. Before surgery I was at gym 3 days a week so I have been walking each day but I still have a lot of pain. I feel like my endometriosis was over a scale I’d 10 always. Right now my lower back pain has since lowered significantly and while this not a cure I feel like this surgery for me really did benefit me. I did end up in hospital not even a week after due too breathing problems. Due too all the gas in stomach and upper. I had no issues passing gas and pooping but that was a goal I was determined to meet because I heard that is terrible. The upper gas was hard, and I had a breathing treatment for 10 days. I’m am 16 postop and sleeping is hard. I wake up with pain but in stomach and that sounds normal. My doctor is shocked if how much walking I’m doing but I feel like I’m slow and to be honest I didn’t start driving until a couple days ago and with three kids I don’t go far right now. Lifting is no joke. You have to have someone for 8 weeks to lift so your bottom doesn’t get messed from everything they did.

We have military, my school, and police department support and it has really helped. I have had many surgeries on pelvis for my dysplasia tumor but this one has been the hardest to experience and endure. Your body gets beat up and there is not physical therapy, only pelvis floor therapy which is something you do later on if you have rectum damage. I will have to go on a medication to help prevent more endometriosis. I only my ovaries left and that is bittersweet but I have also realized how lucky I am that I got three with endometriosis as the doctors are in disbelief and say I was blessed.

I think every case is unique and so a treatment has to be in the best interest for you. I hope this gives some insight on the treatment for it.

Words of Advice for Us:  Don’t lose hope. If you have a chronic pain seek medical attention and don’t be afraid of getting a second opinion.

The Last Word: I would say If you have chronic pain and it’s hard and challenging by nighttime don’t rely on pain meds find a solution but seeking a better treatment.

I want to send a special Thank You out to Michelle for being brave enough to share her personal story, struggle, and victories with us today.  As you say, “Don’t lose hope.”  You’re not alone in this battle.  You are a beautiful, brave, and strong woman.  Thank you!!!

Piece of paper with "Tell your story" written on it

And if YOU would like to share your story, I would love to share 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: LJG

LJG was 30 when she was diagnosed with Endometriosis.  Now 33, she tells us a bit about her Endo journey and how diet has helped her along the way.

LJG’s Journey:   Always had painful first day of cycle and thought it was normal. Wasn’t sexually active till 25 and had no pregnancy scares while using little to no protection. My hubby and I decided to try for a baby so we both got checked out. He has kids and his sperm was fine. My gyno suggested an HSG test. Did it, no pain which is odd cause I heard horror stories. One of my Fallopian tubes was blocked. Shortly after I had painful sex, I couldn’t walk well for days (I think he hit a cyst). Went to a different gyno cause the other didn’t seem to have urgency. He found an infection due to the dye that got stuck in the tube from the HSG test. We went to a fertility specialist and suggested a laparoscopy to see if it was endo and said I have a higher chance of getting pregnant if the damaged tube is gone. At that time I found out my mom has endo (I knew she got a hysterectomy when I was 4 but didn’t know why).  He did the lap, removed scar tissue, several chocolate cysts, and one Fallopian tube. The best chance was within 6 months. This created issues with my hubby and I, planning intimacy and heartache every month. I started to have more pain each month. So I turned to support groups online and learning more natural things I can do. I tried one month drinking wine with dinner and eating whatever I wanted, dairy, gluten, sugar, processed crap and soy. I was in the worst pain. So I cut out alcohol fast and tried to cut back on everything else. Less and less pain. All this took a year going from one doc to the other. Changing eating habits is a process I’m still learning and fail at 3 years later but this last cycle I didn’t take any pain meds!

Words of Advice: Try a diet that works for you and keep at it! I cut out alcohol, cut down as much as I can on processed food, soy, animal products and gluten. When I do eat animal products I do organic, grass-fed type of products. Learn more about GMOs and what the animal eats is what you’re eating. Add things to your diet like turmeric (natural aanti-inflammatory spice in Indian food) and tart cherries! I drank a couple shots of tart cherry mixed with dark cherry juice the day before and during my cycle and pain decreased. I have also started to juice: mainly beets, carrots, celery, apple. Sometimes I put in pear or blueberries. Trying different period products, I tried a couple brands of organic cotton tampons and pads at the same time cause my flow was heavy. Some organic tampons came apart easy so I got nervous and tried the diva cup. I only do it in the beginning now but the results are amazing. My flow when from heavy to a medium to light flow. (could be a mixture of cup and healthy eating).

The Last Word: This month I’ll be 34, my hubbies ex is giving birth any day to another child. I used to feel crappy cause she could give him a kid and I couldn’t. I haven’t looked into seeing if my other tube is blocked so there could be a chance I could get pregnant. My hubby and I have talked about adoption and ivf and just this past week I finally feel like that option is an option for me. There is hope! Things don’t always come on our time or the way we expect.

I want to send a special Thank You out to LJG for being brave enough to share her journey with us today!  Best of luck maintaining your diet, finding what works best with your pain, and your ongoing efforst with your hubby for a child!    ❤ Yours, Lisa.

downloadAnd 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.