Endo surgery?

[Cazzoo]

Hello all,

I was diagnosed with endometriosis in October, seen consultant at beginning of month and told the only treatment for me left is surgery. I’m in constant pain…. And it’s affecting every area of my life. The recommended action now is a hysterectomy as all other avenues are exhausted. I don’t want to go through this radical surgery if it’s not going to improve the pain. Is it best just to have the endo treated via surgery first then see how it goes before full hysterectomy? Anyone had this treatment done? Advise would be welcome.

[meg73]

Hi Cazzoo,

A hysterectomy is not a cure for endometriosis so if you are being told this, I recommend getting a second opinion! I am not aware of your specific case, but I would imagine that excision to remove endometriosis could provide some relief and is less drastic than a hysterectomy.

[Cazzoo in reply to meg73]

Thanks for reply, In fairness it wasn’t put forth as a cure all but as treatment. It’s the last thing to try to help with the pain. But I’m considering just having the endo lesions treated first rather than having the hysterectomy. I’m in my early 40’s and the natural menopause is still a good few years away.

[PenelopeClearwater]

Hi Cazzoo 👋

It’s a huge decision to have a hysterectomy and there are definite positives and negatives to it, but it won’t necessarily make the pain go away, as there could be an underlying or perhaps connected condition causing the pain. It may be worth speaking to an endometriosis specialist and perhaps a nerve specialist/NHS pain clinic - your GP should be able to refer you.

After having ablation surgery on my endo, I had a full hysterectomy 3 years ago (ovaries removed with everything else), when I was 33. Very young for a hysterectomy, but I was 100% certain that I was happy to do it.

And I’m glad I did, as it definitely helped me in the fact that I no longer have endometriosis and I don’t have the awful, sometimes months-long periods anymore.

After about 6-12 months or so though, I started getting abdominal pain again, which has got progressively worse and I’ve just been diagnosed with fibromyalgia. With the understanding I now have of the condition, I’d say I’ve had fibromyalgia for a very long time and thought the symptoms were all down to endometriosis. I think the years and years of endo pain may have contributed to frazzling my nerves, but I also think the fibro contributed to the endo pain.

So on the one hand, I’m pleased I had my hysterectomy, because it really helped with one aspect of my health, but it certainly didn’t put an end to all the pain.

Unfortunately, there is so little understanding of invisible illnesses and health issues specific to women 😒

Obviously, this is just my experience and I’m glad I had the hysterectomy, but it was a lot to go through to find that the pain and exhaustion was still there - I pinned all my hopes on the hysterectomy taking the pain away and now I just have to accept that I have fibromyalgia and I just have to manage the symptoms.

Sorry mine isn’t a super positive tale! I really hope that whichever option you go for will help you 🥰

[45Bumbleb]

Hi thereMy situation is a positive take! I was suffering very badly with pain and extremely heavy periods, I was so down and exhausted with it . An ultrasound showed cysts on my ovaries , fibroids and a hysteroscopy revealed a polyp . My CA125 blood test revealed high levels which can mean endometriosis or ovarian cancer (unlikely to be the latter) Myself and consultant had a long chat and at 45 , I had no plans to have children so a full /total hysterectomy was agreed , she decided to make the incision a vertical one on my tummy for explorative reasons

Thank goodness she did ! I have level 5 endometriosis all over my Fallopian tubes, ovaries, bladder, bowel, omentum - she worked hard to remove it off all of my organs whilst removing the womb . I consider myself extremely lucky . I did go into a surgical menopause but I don’t miss the horrendous pain ! It’s not a cure , but your ovaries produce estrogen and that’s what endometriosis feeds on. As the consultant said ‘you must have truly been in horrendous pain and your going to feel like a new woman in many ways. ‘ she was right. It’s tough surgery (I have lots of tips) but it was right for me at the time but you must ask lots of questions and be happy with exactly what it is they will do . The surgical menopause is a Challenge buy I’ve had lots of help with that and eventually went to a private menopause clinic as HRT can be questionable with endometriosis but a solution was found to help massively .

Good luck!

[Sammyjam]

Hi there unfortunately I am new to this I was diagnosed yesterday by ultrasound is this the case for u ! I am yet to see the Gyno regarding my results so I have no idea what options there r for me ! I am 42 this month , even though I’ve had my children I don’t want the hassle of a large operation with long recovery at this moment, I know I’m not much help but just to let u know u r not alone .

[Cazzoo in reply to Sammyjam]

it’s comforting to know there are so many of us out there! I have been suffering for probably the best part of ten years. I had very heavy bleeding /clotting. I had all sorts of treatments from the coil to the injection nothing helped. I had to come off the pill because of severe migraines and I was also diagnosed with severe sensitivity to prostaglandins.

I have been back and forth hospitals gps even paid for a private consultation with a gynaecologist. Ive been told I have bowel issues, ibs, torn hip cartilage to explain the insane pain….. I ’ve had MRIs, ultra sounds external and internal, but finally the truth is out there. The cause was endo. It had caused my bowel to stick to the pelvic rim, I had a cyst on my ovary and endo well everywhere! You constantly get fobbed off. I had one gp tell me because I was in so much pain even to walk… to walk like a crab!!!

I just kept on and on until I was heard. The private specialists were the worst, I paid for them to be very vague about my condition, then they failed to add me to any NHS waiting list because I wouldn’t pay the £££££ they wanted to charge for exploratory surgery. When they were found out I was put back on the list where I should be, but that was down to the head nurse calling them out!!!! Funny enough I had the same consultant I saw privately do the surgery on the NHS…..

the frustration and suffering so many women go through just to get a diagnosis is insane. I cried when they told me what I had, not out of sadness but relief! Relief there WAS an explanation for the pain and a proper label for the condition.

I’ve been advised to have a hysterectomy now.

There seems to be very little support for this condition that robs so many of a normal life.

All the best to all fellow suffers.