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
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
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