My experience of radical surgery for stage IV endometriosis

[Helen_72]

Hi Everyone,

I don't usually post on forums like this, but I thought it was important to share my positive experience of radical surgery because I have read so many post from ladies who are completely torn as to what to do.

I was only formally diagnosed with endometriosis in October last year after having pain and heavy bleeding since I was 13 years old. I am now 45! I also developed Chronic Fatigue Syndrome 3 years ago and recently found out that the two conditions are linked!

My local hospital had messed me about quite a bit, having done a hysteroscopy D&C and insertion of Mirena in Jan 17, (they didn't think a lap was necessary!). I had multiple admissions to A&E with severe pain following that and scans showed an endometrioma. When my diagnostic lap was done in October, I was told I had endometriosis 'everywhere' with bowel involvement and that any further surgery would have to be done at the nearest Endometriosis Centre. Luckily, ours is only 11 miles away.

I was seen in Jan this year, had my MRI scan and saw the Endo specialist Surgeon last Monday. Thankfully, the endometriosis hadn't infiltrated my bowel, but the bowel was 'tethered' to the back of my uterus. He recommended a 'pelvic clearance' - uterus, Fallopian tubes, ovaries and cervix all to be removed plus a bowel specialist to be present to untether my bowel at the same time. I was told I had a 3-4month wait but I actually got a cancellation that same week!

So, last Thursday I had a Total Laparoscopic hysterectomy, bilateral salpingo-oopherectomy and removal of endometriosis.

I am very happy to report that I am feeling really good. It was so strange, but straight away, I could tell that the disease was 'out' of me. I have post op discomfort but it's totally manageable ad nothing like the pain I was in before.

I was discharged after 3 days and all my visitors can't believe how well I look. As for the fatigue, well that too feels better already. I am tired of course- it was major surgery- but not the bone aching fatigue that has ruled my life for the last 3 years!

It is early days and I will have to take things easy but I feel so glad that I've done it! I was spurred on by a brilliant post on here, written by Pinkpig from 5 years ago, who had a really positive experience, so I felt I had to post this too, in the hope that it helps someone else like it did me. I firmly believe that going to an endometriosis centre with a BSGE surgeon is the reason I am feeling so well.

[Hidden]

Hi helen_72, just wanted to say thank-you for taking the time to share your positive story. I'm 44 and was just diagnosed with endo last October too. I am due to to have excision at BSGE centre at the end of June, unfortunately it has infiltrated my bowel and have been told will highly likely need a bowel resection. I'm so anxious at the prospect of such major surgery and what the outcome will be, but pinning a whole lot of hope on this in order to get my life back, so it is really reassuring to read your post. Hope you continue to have a good recovery and hopefully I can post something similar in a few months! Xx

[Helen_72 in reply to Hidden]

Hi Pj74,

Thank you! I'm so pleased it has helped you. It's so daunting when you know what is ahead of you but all I can say is keep positive. I'm sorry you need to have bowel surgery as well. I thought I was going to have to have a bowel resection at one point but I didn't. Still, my surgery was done as a joint case with a bowel surgeon there.

I knew radical surgery was the best option for me in the long term. I didn't have a lot of time to prepare myself as it all happened so quickly but I took great comfort from the lady who kindly posted about her surgery and I thought 'right, I'm going to do this!' Eat well, boost yourself with vitamins and you'll do it. I can't tell you how much better I feel already. You will be in good hands at an endo centre, they really are experts in their field.

Good luck! Xx

[Hidden in reply to Helen_72]

Thank-you! I was much more mentally prepared months ago, but I've become more nervous because I've had such a long wait and had too much time to think about it! 😣 xx

[honeybug]

Hi Helen72🌺🌸🌺🌸

Your story sounds like mine. I had my surgery at 46 and some bowel involvement with massive adhesions from PID. I still have some bowel pain occasionally from the adhesions but I don’t regret the major abdominal surgery that cleaned out that cursed disease. 👏👏👏👏Thank God it’s over🙏😊🙏😊🙏😊

So glad you’re over it too💕

Best wishes with your health 😊🌸 🤗💕xxxx