Hysterectomy or not for Endometriosis?

[LH38]

Hi, I have been advised after my last laparoscopy that I can not keep having operations and that this consultant ( I have seen many) that he suggests it is best that I have a Hysterectomy. Meanwhile I have had 4 Zoladex implants. He advised that I go away and read forums and think what I would like to do. I am under 40yrs old, we have one child and I am happy to get rid of my ovaries if this solves the need for Laparoscopy's but across forums I am totally confused. Is this a good idea or not? Any others in the same situation? Any had a hysterectomy and thoroughly recommend or advise not to?

[AllWeNeedIsluv]

There's, a lady on here who I chat with. I would suggest you maybe have a chat with her she might be able to offer you some help she's had a hysterectomy she's a lovely lady. If you click on her name you'll see her posts. Give her a message. 💗🤗😘 good luck hun

Sweetyassi

[Judan]

I think you need to research all your options then make a decision.

It's a big op to have, and depending on whether you leave your ovaries behind or not will effect you too 40is young to be thrown into menopause.

Firstly I would check if the consultant is BSGE as gynaecologists are not always skilled in finding endo and treating it.

I had a total hysterectomy (uterus, cervix and ovaries) with endo excision 8 weeks ago, and for me was the right decision. My ovaries were stuck together and to my uterus, which was stuck to my bowel and back, chocolate cyst on one ovaries, adhesions everywhere, fibroids and adeno so pretty big mess. My quality of life was zero, and constant pain.

Hope that helps, good luck and big hugs xxxx

[LH38 in reply to Judan]

I can't see that my consultant is BSGE registered. Know he is key in urogynaecology. May help as I do suffer with lateral sacks in my bladder and wonder how much scar tissue is causing water infections. Just finding this very complicated not comforting, when all want is right decision. My last op they untwisted my tubes, unstuck my ovaries, removed visible endo and cists. It was my worst op so far, I felt like I had had a major operations, where previous ops I felt far better, last one knocked me out of work for 6 full weeks to walk or stand was awful where I'd been great before. I have a history of Crohn's too and I am aware I don't want this to flare up. I don't know what stage endo. I get pains still as if on strong period which I can live with no where near as crippling as my endo so maybe I can limp on a bit more before removing my ovaries as he has recommended. Thank you for your replies x

[sanchia46]

How many operations have you had my dear?

[LH38 in reply to sanchia46]

Hi sanchia46, I had my first laparoscopy at 16, bowel operations to remove my appendix and 5ft of my small bowel, 2 further laparoscopy, c section, last laparoscopy May this year.x

[sanchia46 in reply to LH38]

So you've had four? The horrible thing with endo is that it can grow back.

[LH38 in reply to sanchia46]

Yes that's right. Why this consultant thinks best to remove my ovaries and any endo reducing further operations in future.

[Hidden]

I had this surgery back in march at the age of 39. For me it has been life changing but I had very severe disease and was in a lot of pain. It really depends on so many things. TBH I think telling you to read forums is a recipe for disaster - my consultant specifically told me to stay away from Dr google because you can end up so frightened that you can't make a decision.

I would advise getting a second opinion at all possible and as has been said, if you have severe disease, get yourself referred to a bsge accredited centre.

[LH38 in reply to Hidden]

I have previously gone to private consultant who said I've either got to be pregnant or on a contraceptive to prevent reoccurring endo. Found I may not be absorbing all contraceptive as I have problems with my bowels. Why found evra patches best, I lost weight, didn't bleed continuously but I began getting migraines, so won't prescribe anymore. Then started down coil nightmare couple of years. Then decided enough I didn't want anything felt well until pain got worse and worse week before my period cramps stopped me from being able to work. NHS consultant no record of endo as all private diagnosed so wouldn't take me seriously until I was admitted to a&e before Christmas with the cramps. Waited till May when I couldn't take anymore got a Saturday urgent operation find all tubes twisted stuck together, cists and endo. Finally taken seriously. I had previously asked a NHS consultant during coil nightmare for hysterectomy, he was furious with me, so to have this consultant say enough operations you need to decide was bit of shock and relief. Sorry long babble! Sad and comforting to find others alike, thank you for your time replying x

[sanpit47]

Hi I know how confused you must feel to some they can’t wait to have a hysterectomy, others like me, and sounds like you for posting this, have questions to ask. Many years ago I had to make the same decision, I felt this wasn’t for me I was 43. I joined the Endometriosis Society and joined a local group in Essex that had get togethers, at some of these get togethers we Would have speakers on all different subjects of health issues. It was at one of these that a nutritionist gave a talk on Candida (Yeast infection) and the damage Candida can do in many areas of our body. I went for a consultation and never looked back. I went a a regime of diet and vitamins and minerals, I lost a lot of weight and I felt great, no more pain. I was sleeping well I had loads of energy and my moods diminished. There were a few from this group that also went on this regime all very positive. It was hard but I was so relieved to be pain free and with the need fir surgery. This worked for me, I can’t say that it would for others, but if this gives you an opening to think about and it helps you I can’t ask for anything more than you get the treatment that is right for you. Good luck and good health 🌈