Thought it was under control after years of multiple serious surgeries and diet changes but now facing new battles - any advice welcome

[Greys90]

Hello all,

I was diagnosed with endometriosis aged 21 after 8 years of awful problems and symptoms.

After my first laparoscopy I was initially told it was “just a few spots of endometriosis” and my options were chemically induced menopause (gnrh and add back HRT) or to get pregnant and they fitted the mirena coil. (!)

I sought a second opinion with a specialist which led me to having laparoscopic laser surgery to excise what was there. After the surgery I was advised it wasn’t just a few spots it was the worst case they had seen and they advised it was stage 4 severe endometriosis. I had many large cysts, adhesions and deep infiltrating endometriosis affecting my ovaries, bowel, rectum, vagina and rectovaginal septum. I needed to be referred to another specialist in a different hospital.

Under the new specialist over the 2 years that followed, I had more surgery by laparoscopy, the mirena coil stayed in situ, a 6 month chemically induced menopause with gnrh injections and HRT in an attempt to ease symptoms and enable me to “manage” better and an overall attempt to avoid having any bowel surgery avoiding damage or complications.

Unfortunately this was to no avail and I continued with debilitating symptoms and problems. It was decided I would have a laparoscopic anterior resection.

I was marked up for a colostomy bag and while it was incredibly daunting I was of the mindset that if that meant I would be better, in less pain and able to do normal daily things again, then so be it.

After the surgery I was told they tried to do it via keyhole but my organs were twisted and stuck together with all the adhesions so they had to convert to a laparotomy and I was cut from pubis to above my belly button. It was a long complex surgery lasting 10 hours, the resection was successful, I didn’t need a stoma and bag and after excising more endometriosis they managed to rearrange my organs.

I stayed in hospital for 6 days following the surgery and recovery took a very long time.

Unfortunately my symptoms returned following the surgery and after researching I decided to follow a plant based diet in the hope this would help me as I really didn’t want any further surgeries after what I had previously experienced. It was very disheartening to have gone through all of this and to still be suffering - why had I put my body through all of this to still be in the same position and worse as I now had more scar tissue inside.

I still had the mirena coil in and continued with the diet. I still experienced symptoms but it wasn’t to the extreme of being hospitalised and having surgeries and I learned to live with it.

Fast forward 8 years to now: I have moved 300 miles down country, I’m now 31 and had managed to lead a relatively normal life apart from the days of my period which would send me over the edge. I would need lots of painkillers, tens machine, hot baths, ice baths etc.

My periods over the last 6-9 months had become longer and more painful, I was experiencing more back pain, abdominal pain, pain in my side, pains when taking a deep breath in. But I just carried on.

Then recently I had come to the end of my period and the bleeding had stopped for a few days when one night I had excruciating pains in my right side from my hip up to underneath my ribs and severe vomiting. I couldn’t move and my fiancé carried me to bed. I was in so much pain which continued through the night, my fiancé wanted to call an ambulance. I insisted I would be ok and just needed to sleep as didn’t want to go to hospital but in the morning I admitted defeat and he called an ambulance.

I was rushed into hospital and in A&E they scanned my tummy and found there was lots of fluid in my pelvis, so I was admitted for investigation. After scans they found 7cm and 8cm endometriomas on each ovary, and fibroids in the rectovaginal septum and going into my vagina. They gathered an endometrioma had ruptured and was leaking fluid into my pelvis. I had a laparoscopy to remove the cysts on my ovaries and clear the fluid from my pelvis.

I was told there is lots of active disease and my surgeon wants to downgrade my ovaries and do the chemical menopause with HRT to see if it will manage my symptoms. The endometriosis is also now involving my bladder and the ureters to my kidneys so I need to have testing on kidney function and they need to decide what to do about the endometriosis there.

Long term if the chemical menopause and HRT doesn’t work they have advised ovary removal and further bowel surgery but my surgeon stated I would need a colostomy bag if they did what was required.

It was very unsettling to be told this new information and that I am now facing new battles ahead with my endometriosis which I thought I had under control (sort of in my own way).

I guess I’m reaching out on here to tell my story and hear back from others who are experiencing or have experienced the same or similar.

It would be really really great to hear from anyone who has received similar treatment and your experience/advice on it. Also if you have received alternative therapies, herbal, natural remedy, or any advice at all.

I really am open to anything that will help as I can’t help feeling I will still have problems after the surgery as I did before. I don’t know what to do.

Sorry for the very long story I felt I needed to start from the very beginning!

I hope to be able to help others in the forum too with any advice or anything at all.

Thank you

[CryBaby91]

Hi Greys90, I'm undiagnosed but doc is fairly certain they will find endo at my lap. I'm sorry you've been through so much it sounds to me like you've tried a lot of things for the pain so sadly I've no advice there! But sending lots of love and support your way xxx

[Greys90 in reply to CryBaby91]

Thank you for your kind message. I hope you find the answers you need and the support to help you through. Thank you

[USgalwthendo]

I guess my take away on your post, which I am glad you shared, is how sad it is that we have to fight so much and for our lives, our whole lives. We need more research. Why is it some women experience almost no symptoms and others so much agony? I am sorry you have been dealing with this and for so long now. You are very strong and good for you for getting a second opinion at the beginning.

I have stage 4 endo diagnosed via laparoscopic robotic surgery age 34 when trying to get pregnant. I’m 42 now. I haven’t had any subsequent surgery I am trying to avoid that but I am also on no meds or diet(yet). I have excruciating periods but I just weather them in a debilitated fashion with my tens, heating pad, and ibuprofen. I’m guessing my endo has progressed like yours, but I am putting off doing anything more as long as I can.

Im intrigued about your diet changes and how that helped you for awhile. my rheumatologist suggested avoiding gluten due to high concurrence of endo sufferers who are also gluten sensitive. (I have joint pain and crushing fatigue and brain fog as well as endo, seeing rheumatologist to address joint issues but she was well versed on endo too). I haven’t gone gluten free yet, need labs first, but then I’m going to cut out gluten and hope for the best. Did your plant based diet have gluten?

After my surgery 8 years ago, my pain came back immediately even though it was minimally invasive surgery and as far as I know it was very thorough. This disease is a real health wrecker

I’m sorry I don’t have good advice. Just continue getting other professional opinions as much as possible. As you know, every surgery adds more scar tissue and can make endo worse. Are there any options of just meds but no surgery? If there was a way to get the surgery but know you will remain pain free it would not be so daunting. But knowing you’ve done all this before and it all came back, and worse, is just devastating and I give you so much credit for being so strong through all this.

I will be interested to see how you progress and what advice you may get on here. I get a lot of great feedback and suggestions as well as support from this forum.

We are all Warriors

[Greys90 in reply to USgalwthendo]

Thank you so much for your reply and kind words, it’s helpful to hear others experiencing similar even though it’s awful so many are going through this!

Regarding diet, I found cutting out meat and bread definitely helped stop/massively reduce the swelling of my tummy - I previously looked full term pregnant my tummy was sooo swollen, sore and hard! So I am gluten free and think this helped a lot.

I also swapped cows milk for oat/almond milk and yoghurts for coconut yoghurt. I found this helped with digestion issues and lessened urgent trips to the toilet as it became clear cows milk etc was going straight through me.

Sugar used to make me flare up which just goes against all the stereotypes that women need chocolate and icecream when suffering with their period! Ha!

As I saw changes and improvements of symptoms it really gave me more motivation and reason to continue with the plant based diet.

Following the recent surgery I asked if my plant based diet wasn’t helping if I had ended up here again but the surgeon and consultants positively encouraged me to continue with it.

I would like to explore other options perhaps herbal, supplements, anything really as I’m just not sure about having another serious surgery.

I really hope you find something that helps you in your fight against endometriosis and look forward to hearing how you go with the rheumatologist labs and gluten free!

Thank you again

[EndoJaz]

It’s unbelievable what you have been thru, how do u manage to stay strong thru it all. I so admire your strength xx

[Greys90 in reply to EndoJaz]

Thank you for your kind words, I don’t always feel strong. I have a very supportive fiancé who has been by my side from before my diagnosis so he has seen it all and some very good friends, so I am very lucky. I’m sure you are strong in your battle too.

Thank you

[EndoJaz]

It’s been a long long time of fighting and then hope before surgeries and disappointments when pain carries on but good days and bad days. It helps to hear from others. We all support each other xx

[Gingerbread55]

Hi sorry to hear about your situation. It was really helpful to read about the different stages you have gone through and what may lie ahead. I had surgery for stage 3 endometriosis and it was so horrible and recovery was long and painful that I’m determined not to have surgery again although it has all come back and now I’m diagnosed with stage 4 severe endometriosis with large cysts on both ovaries and elsewhere plus 4 smaller fibroids. I will eventually go for a hysterectomy which seems to be the only permanent solution.

I have been trying to get pregnant for the last 9 months and this condition which could be causing infertility just makes everything even more daunting. The only reason to go back to surgery would be to clear any blockage caused by endometriosis but that doesn’t guarantee anything. So I’ve decided to take it month by month and see how things go since it’s impossible to plan anything for certain.

I have not yet explored dietary changes but came across this research through a friend and am thinking of giving it a try since it’s not harmful and the results seem promising.

nutritionfacts.org/video/ho...

Hope you find it helpful. Good luck.

[Greys90 in reply to Gingerbread55]

Thank you so much for this video it does sound very promising and I will definitely give this a try. I’m sorry to hear of your journey so far and hope you find the solutions you need and things improve. Thank you again