Jen reached out to us to share her story about her diagnosis with Endometriosis. Now seven years after she found out she had the disease, see how she’s doing today…AND if you’re in the Sarasota, FL, area and hosting any Endo events or need a local EndoSister, here’s your gal!
Jen’s Journey: I was 23 when I was diagnosed with endometriosis, it took Doctors 5 years to diagnose me, I was lucky it wasn’t longer like most. I never had bad periods, but I did have extreme cramping & headaches. I feel pregnant a lot of the time & unfortunately I have to deal with that feeling knowing I’ll never have another child because I had a complete hysterectomy when I was 28.
I never had a support system because no one understood how I felt & that was very frustrating for me, so I kept everything hidden deep within my soul. I’ve had 8 surgeries due to this awful disease have there’s a lot of people that know me & don’t have a clue that I live with chronic pain on a daily basis. The endometriosis has come back 3 times now after my hysterectomy, in the past year I’ve had 3 surgeries to remove the endometriosis. I’m thankful that I have finally found a doctor that listens & believes me.
I walk around tall & with a smile on my face even when I feel like I’m dying. I cry in the shower & toss & turn every night because of the discomfort. After surgeries, I’ll feel good for 3-4 months then boom….I’m in severe pain AGAIN.
Two years ago I met the most supportive man I never thought was out there, I’m grateful everyday for him, he tries his hardest to understand what I feel every single day. I also feel very guilty because I show no interest in sex with him because it’s extremely painful & my guilt leads me to trying to please him every single day.
I was also recently diagnosed with Fibromyalgia, having these 2 chronic illnesses is life altering. I’m learning how to deal with this more & more as time disappears. I’ve taught myself to meditate & relaxation breathing; I’ve also learned how to clear my mind from over thinking because it always ends in stressful situations & if I’m even the slightest stressed, I become very I’ll for days & sometimes even weeks.
Words of Advice for Us: You’re not a lone! Do not allow this unfortunate disease to run your life, you show endometriosis who the boss really is!
The Last Word: Do not feel sorry for yourself every day. It’s completely normal to have pity for yourself & to be depressed; any human has that right because life is challenging even being as healthy as one can be. You just have to know when to pull yourself out of that mental breakdown so it doesn’t become worse or even permanent.
I want to send a special Thank You out to Jen for being brave enough to share her personal story, struggle, and victories with us today. You are a beautiful, brave, and strong woman. Thank you!!! Please continue your meditative efforts, every little bit helps! And please, stay in touch.
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.
“What would life be if we had no courage to attempt anything?”
And it’s true! Do you have an idea? Make it happen! Do you wish there was (fill in the blank) in your town? Start it. You want to chop off your ear and give it to a prostitute…well, no, don’t do it…
I’m inspired by my good friend, and EndoSister, Donatella Soul. She has an idea and she confronts it like a freight train! She’s so passionate and organized and talented and and and – and I can go on and on.
So, you, yes you – what have you been wanting to do? Just go make it happen. And happy weekend!
Donna lives in Britain and was in her early 20’s when she was diagnosed with Endometriosis. Nearly 20 years later, she tells us her story…including something that happened to her eyes about 10 years ago. She continues to live with Endometriosis and her eye-issue.
If you haven’t read about Endometriosis and the eyes, you may want to do so by clicking here. But do come back and read Donna’s story when you’re done.
Donna’s Journey: Hi my name is Donna, it all started when I was nine years old when I started my periods. My childhood was ripped away from a very young age. I never had normal periods my cycle was every 14 days. When I would bleed I would often drench the bed with blood. My Mum took me to my Doctors and he decided to put me on hormone replacement tablets to begin with. The pain I would experience was unreal yet no one really understood. Year in and year out my periods stayed at a 14 to 19 day cycle.
When I was in my early 20’s I started to suffer from depression and mood swings. I decided to go to my GP who was a gyne by trade. Straight away my GP took several blood tests which turned up abnormal (I was on the pill). My hormones were sky high so my GP decided to send me for an ultra sound yet nothing really showed up. My GP was still not happy and decided I needed surgery as something was going on with my womb. It was a massive blow as I went for depression and now faced surgery. They opened me up and found I had endo in four spots at this time. But the specialist was away on holiday no doubt, so I had to go back into surgery after a few months. That is when my life totally changed a month later I went back for the results.
Only to be told that my specialist found endo attached itself to my bladder, right kidney, bowel, pouch of douglas, pelvis and nerves. I was stage 4 I was told. I was confused and said but its a condition isn’t it! The Doctor shook his head and said “Donna, It’s a disease and as your stage 4 you won’t be able to have children. I would suggest that you should have a hysterectomy.” My world crumbled before my eyes as tears fell freely. I was only around 23 years old. I left hospital numb and refused a hysterectomy. I wanted to prove to the world that if I can get pregnant so could others.
Every two years I had to go back on the operating table to remove the dreaded disease that would come back again and again. You all know the pain, the isolation, the frustration of your body feeling like it’s not yours with this disease .
Then in 2005 something strange happened I was putting on my make up and noticed my left pupil was bigger than the right pupil. I thought what on earth is going on! I usually suffer from migraines around my cycle but I had never seen my pupils like this before. I started to see black spears, shadows around me from the moment I woke up to the moment I closed my eyes. In the end I went to my GP who looked into my eyes and admitted I had a problem due to pupil size difference so referred me to an optician who was next to useless.
It took me till 2008 and changing Doctors to find out what was wrong with me. Holmes Adie pupil syndrome my GP then tested my knee reflex jerks which was normal. The GP said it was due to migraines yet I wasn’t happy about this as it came with my cycle normally yet I’m extremely light sensitive every day. Would I have a migraine every day since 2005 that is totally different to normal migraines? Seriously I knew part of what my Doctor said was true but I wasn’t happy.
In 2016, My dear friend Kristy who works in a great opticians wasn’t happy with what I told her and booked me to see her opticians that is totally on the ball. My optician was very sweet and confirmed Holmes Adie and referred me to hospital to have more tests done. Eye sight is fine yet I need glasses with a tint otherwise the page is a blur and looks painfully bright. Hospital Doctor was showing me off to one of his nurses due to the oddness of the Adie as its rare. No optic nerve massive damage was found. He couldn’t give me a reason on why this was happening and never asked questions if I suffered from Endo.
I did have a child, Kyle in the end who is a massive blessing and decided to have partial hysterectomy three years ago. My Gyne wanted me to keep my ovaries as he didn’t want me to turn into an old woman (his words!). Year in and year out my Endo has returned like normal and I’m seeing gyne in June to say remove my flipping ovaries, as I have a lot of problems with my bowel, right kidney and bladder even now. I will be telling my gyne about my Adie and its about time they look into this matter seriously as I’m still stage 4. My Adie pupil problems have remained the same if not worse with visual disturbance.
Finding out Endo is related to Holmes Adie pupil syndrome makes me angry and so isolated.
If I go out in the evening with my dear partner and son I have to wear sunglasses as on coming traffic kills my head and eyes. If I go into certain shops I have to wear sunglasses even if its dark outside. If I don’t I feel sick, spaced out etc. I have to wear sunglasses if I’m in the car in day light if I don’t my eyes hurt with the flickers of light from the passing trees. At times when my Holmes Adie pupil is very bad I feel like my head wants to explode and I feel like my eyes and ears need to bleed to reduce the pressure. I have a knifing sensation from inside my eyes (pupils) when its bad. It hurts to cry. So I have to try and not cry otherwise the pressure is unreal to cope with. Luckily I have tablets for when it gets too bad to cope (migraine tablets). I tend to take an anti inflammation tablet also as this helps. But still my pupils struggle to cope but its more manageable with regard to pain.
All I can say if your not happy with the pupils of your eyes do NOT give up and tell your Gyne Doctors. Don’t go the very long route like myself with GP’S as they won’t think about adding up Endo and pupils. I’m learning bits now via Oliver Sacks books (who was a neurologist) with regard to Migraines and Hallucinations (due to my visual disturbance with regard to my Adie). It has helped me lots to have the courage to tell you my long story with my freaky pupils and Endo.
Words of Advice for Us: If your gut feeling isn’t happy with an outcome from your Doctor then research and don’t let it rest. Be strong as your not alone. Hugs xxx
The Last Word: If I can have a child, so can you.
If you would like to contact Donna, you can email her at firstname.lastname@example.org. She’d love to hear from you, especially if you’ve had similar problems with your eyes, or suffer from Adie and Endometriosis and have questions for her.
I want to send a special Thank You out to Donna for being brave enough to share her personal story, struggle, and victories with us today. You are a beautiful, brave, and strong woman. Thank you!!! Please keep us posted on your Adie after your June procedure. We’re all crossing our fingers and toes for ya. ❤
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.
Well, I’m a day early; I know…but I’ll be making a road trip to see family and won’t have a chance to share tomorrow. So, today it is!
I respect my gynecologist so very much. While sitting with him to discuss recent test results, and my displeasure at my insurance’s handling of a situation, he encouraged me to write a letter, which I did. He had done so that week already.
The long and short of it is the medical group has decided that HMO patients can no longer have imaging studies performed by my doctor; that we have to be ushered to an off-site facility to have a complete stranger perform the test, then wait a few weeks to hear the results. PPO patients are still able to have their imaging studies done by my physician…but not HMO. It was stressful.
But, my doctor said something that resonated on so many levels
“You may not only change your own life, but the lives of others.” ~Dr. Mel Kurtulus
Take that to heart. And know that your little actions may very well influence many.
After two weeks of wringing my hands, getting all worked up, losing sleep, crying, being in a depressed funk, and trying to breathe and stay calm while wearing a smile, I have peace. I was finally able to sit down with my doctor today to discuss the results of an ultrasound I had two weeks ago and how my Endometriosis is doing.
My medical group had decided that my OB/GYN was no longer the man for the job and I’d have to go off-site for the transvaginal ultrasound. Not onlydid the technician not know my body (aka my unique anatomy) or Endometriosis, but she also couldn’t find my right ovary (which I understand isn’t all that uncommon). But, had Dr. Kurtulus performed the ultrasound, he would have kept looking for it…and given me the results of the ultrasound before I even left his office. No waiting, wondering, or web-surfing!
So, yesterday was our fateful day of discussing the US report. The worst case scenario : the Endo was back and I’d need my second surgery already (oh how this thought has made me weep). The best case scenario : everything’s fine and I’ll see you next year. Which one prevailed? The best case scenario, of course. No cysts or other red flags that the Endo may be back. And the missing ovary? Likely it was just hiding – if something were truly wrong with it, it’d show up all kinds of wrong on the imaging study. He’s encouraged me to write a letter to my medical group chastising their decision to send me (and others) to off-site facilities, causing these sorts of oversights, delays, and worry. You could tell he was quite angry that the medical group was making HMO patients head off-site. So, I’m not the only one…I’ve zipped him off a copy of my letter so he could forward it to the appropriate people.
My symptoms are still manageable enough to where I’m going to just keep on doing what I’ve been doing : watching my diet and taking my continuous birth control pills in the hopes that the Endo takes it’s sweet time in recurring. Taking my prescription pain meds if it’s too much to bear. If my pain worsens or becomes more frequent, or other symptoms take root, I can go in to see my doctor to have long conversations at any time in the future. We talked for a good 15 minutes today, Dr. Kurtulus, and I. Not only about the scan, but about the Endo support group, our efforts, and our personal lives. Find a doctor you could have long, personal talks with; one you can trust. It makes for a deeper connection. I respect this man, his practice, and his opinion.
For those of you who knew about the past two weeks and held me up (or just held me), thank you. I’d have been an even bigger blubbering mess if it weren’t for you. Last night, my fiance James and I had celebratory sushi for dinner…and I enjoyed a nice glass of red wine. It was time to relax. And celebrate.
So, I’ve worried less this week about my upcoming doctor’s appointment…but it’s still in the back of my mind. Figured I’d go through quotes about worry and anxiety. And found one that made me laugh out loud…again and again. So, today’s choice:
Justin Halpern wrote, “Sh*t my Dad says,” which is just random little quotes from his father. And today’s has to do with worrying. And bacon.
“You worry too much. Eat some bacon…what? No, I got no idea if it’ll make you feel better, I just made too much bacon.”
Ha. It immediately made me stop thinking about Tuesday’s pending appointment…and now I want bacon.
When I was getting ready to get wheeled into the Operating Room back in 2014 for my cystectomy, my Doc tells me that if he gets in there and there’s extensive damage, he may need to perform an oophorectomy (pronounced oh-uh-fuh–rek-tuh-mee). I signed the permission slip/waiver without blinking and off we went. Luckily, he didn’t have to perform one. And this turned out to be my Endo diagnostic surgery. Quite the day.
One of our readers & fellow blogger, SnowDroplets, asked the other day if I could look into the pros & cons of oophorectomies, when to have them, and hormone replacement therapy after the ovary(ies) is removed (especially how it may affect with with Endo). You know how I love to learn about new things, so here goes! And thank you, SnowDroplets, for asking this question. I learned A LOT today.
An oophorectomy is a surgery to remove an ovary. When one ovary is removed it’s a unilateral oophorectomy; if both ovaries are removed, it’s a bilateral oophorectomy. And if the Fallopian tubes are removed with the ovaries, it’s called a salpingo-oophorectomy.
“But, Lisa,” you ask, “why would you need one or both ovaries removed?” Good question! Lots of reasons! And we’ll delve into those reasons today.
Ovaries may be removed due to the presence of ovarian cancer…or even just because a woman may have a high risk of developing ovarian or even breast cancer. If the removal of the ovaries is simply as a precaution, the Fallopian tubes will likely be removed, too, as recent studies have shown that the tubes may also develop Ovarian cancer.
Angelina Jolie underwent a salpingo-oophorectomy because of her already-increased risk of ovarian and breast cancers. Preventative medicine.
Ovarian torsion is when the ovary is twisted so badly that it may obstruct blood flow, causing the ovary to swell, which may cause irreversible damage, abdominal swelling, and pain (it can also twist the Fallopian tube). Torsion is considered among the Top Five gynecological emergency surgeries. Conservative surgery can unravel and save the twisted ovary; however, many women who suffer from ovarian or tubal torsion opt for oophorectomies instead.
Tumors or Cysts
Benign tumors or cysts on the ovary can simply be cut away (cystectomy); however, sometimes the damage to the tissue may be too extensive or the tumor or cyst may be considered cancerous, and the ovary is removed.
An abscess can grow on the ovary or Fallopian tube and it can be very painful. Imagine a nasty like a nasty little puss-filled zit. It usually is the result of some vaginal or cervical infection and may go hand-in-hand with Pelvic Inflammatory Disease. Most ovarian or tubo-ovarian abscesses can be treated with intravenous antibiotics and a hospital stay; however, surgery may need to take place to either 1) drain the abscess, or 2) remove the damaged ovary or tube.
Pelvic Inflammatory Disease
Pelvic Inflammatory Disease is a disease of the pelvis, which can affect the uterus, Fallopian tubes, or ovaries, mostly transmitted through sexual intercourse. Long-term, untreated Pelvic Inflammatory Disease can cause adhesions to develop, or the infection may cause sepsis, which can be fatal. PID can also cause abscesses, which may need to be treated with antibiotics, drained, or the infected ovaries removed (as we just learned).
Some studies indicate that women who suffer with chronic PID share an increased risk of developing ovarian cancer. And, as we learned, some women have oophorectomies to combat their increased risk of cancer.
Some women with PID are advised to get hysterectomies because of the damage the infection has caused to their uterus. The ovaries may be removed, as well.
A hysterectomy is the removal of the uterus, with out without removing the cervix, the Fallopian tubes, and/or the ovaries. Depending on a woman’s age and medical condition, she may opt to keep her ovaries, or have one, or both, removed during a hysterectomy. That is a decision that she and her doctor must make together, weighing many factors.
Some women with severe Endometriosis symptoms may ask for a bilateral oophorectomy, thus ending their periods. Many also opt to have a hysterectomy. When I asked my doctor his thoughts on the matter, he said that it will not cure Endometriosis, but it would help with the painful periods…since I wouldn’t have my period anymore. We’ll cross that hysterectomy bridge if we ever truly have to…but for now I have all my LadyBits.
Studies have indicated that Endometriosis sufferers who undergo a hysterectomy and bilateral oophorectomy have a decreased risk of recurrence. One study had 29 women undergo a hysterectomy, but left their ovaries – 18 of those women had recurrence of Endo. That same study had 109 women who had hysterectomies with bilateral oophorectomies, but only 11 of them had recurrence. A second study showed similar findings with a different bunch of ladies. And yet another study found that it didn’t make a difference if you kept your ovaries or not with a hysterectomy; that the rate of recurrence was the same.
My personal belief is that a hysterectomy isn’t a cure for Endometriosis. I know it has helped a lot of women with their symptoms, but I also know a lot of women who continue to suffer years after their hysterectomy. Excision is the key. And even then it may recur.
That being said, Endometriosis is believed to be an estrogen-fed disease. Ovaries produce estrogen, but so do a lot of other functions in our body (adrenal glands, fatty tissue, and certain foods & supplements mimic estrogen) – cut out the ovaries and our bodies are able to still produce estrogen. Just know that fact…
If you’ve had surgery for Endometriosis, you’ll be familiar with these choices of surgical techniques for removing the ovaries:
Laparotomy: manual surgical procedure using a large incision across the abdomen; usually a longer recovery time with more risks of complications. May require a hospital stay.
Laparoscopy: manual surgical procedure using smaller incisions, tiny camera, tiny surgical instruments; usually a faster/easier recovery. May be outpatient (in and out the same day).
Robotic laparoscopy: same as a laparoscopy, but this time it’s robot-assisted! Queue the Terminator!
Pros & Cons
The biggest pro to an oophorectomy : hopefully you’ll be solving whatever issue caused you to have the procedure done in the first place!
If you have only one ovary removed (and still have your uterus), you’ll continue to have your period and are still able to conceive naturally (well, if your body will allow you to). Even if you have both ovaries removed and still have your uterus, you can still make babies, but with help from SCIENCE!! Consider freezing your eggs for future IVF treatments before the bilateral oophorectomy, although some doctors just won’t do it under the theory that freezing eggs isn’t a viable option.
Women who undergo a bilateral oophorectomy are plunged into immediate menopause. The severe lack of hormones that may also cause depression, mood swings, and sex drive, or even lead to heart disease, osteoporosis, or dementia.
Studies indicate that women under the age of 40 who undergo a bilateral oophorectomy are 7 times more likely to develop heart disease. They’re also at a higher risk of stroke, Parkinson’s Disease, anxiety, or depression. The younger the age of the woman at the time of surgery, the greater the risks of developing these conditions.
Another study indicated that a woman’s risk of developing dementia or cognitive impairment is increased by 50% if they undergo an oophorectomy. Further research is needed, and quickly.
As with all science and studies, though, the data is ever-changing. Reanalysis of past studies are always being conducted and contradicting prior findings. These pros & cons may seem dark and scary…but know that not all women suffer from these side effects or increased risks. Our bodies are our own. Individual. Don’t let these scare you from treatment you may need. Please talk to your doctor.
Hormone Replacement Therapy
To combat some of those cons, some physicians recommend hormone replacement therapy (also called HRT).
Some studies have indicated that women with Endometriosis (and no ovaries) may benefit from a continuous combined HRT (estrogen + progestogen) or the use of Tibolone. Rather than just straight estrogen, these therapies may not stimulate the recurrence of Endometriosis.
Not only can hormone replacement therapy be detrimental to those with Endometriosis, but it once more increases the chance of cancer in women who take HRT. Research shows that women over the age of 45 who had undergone a hysterectomy with bilateral oophorectomy and are taking HRT have an increased chance of developing breast cancer.
Some side effects to hormone replacement therapy can be irregular bleeding, nausea, breast tenderness, leg cramps, depression, and irritability.
When do you know if you should consider an oophorectomy?
Well, you’ll likely not know until your physician says something. He or she may bring it up in a consultation after reviewing your symptoms and imaging studies. Or it may be, like me, a possibility during a surgical procedure.
If the oo-word does enter into your realm of possibilities, please have long discussions with your doctor about your individual medical history, the risks, and the benefits. See if only one ovary needs to be removed, or if they must take them both. If you’re getting a hysterectomy, please know that they don’t always have to remove your ovaries; again, talk to your doctor.
Write down your questions before your appointment. Bring them with you and ask them all…and write down the answers. Sometimes it helps to have a friend or loved one accompany you; they may remember some information you didn’t.
~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
If you’ve wanted to share your Endometriosis journey, or help encourage others who may be going through the same thing, we enjoy reading and sharing them for you. We have a page (click here) that allows you to submit your information to me, and I will post it on the blog! Nobody else will see it until I publish it. Only submit what information you are comfortable with! And I will only publish what contact information you allow me. I will not use or sell this information for ANY other purpose than to post on the blog and share your story!
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