After exhausting all other treatment opti... - Endometriosis UK
After exhausting all other treatment options my consultant agrees a total hysterectomy is the answer, followed by HRT. I'm happy but scared!
Your consultant is clearly incompetent. Find a specialist ASAP. A total hysterectomy is not the answer to treating endometriosis. Read the top UK endo surgeons website (endometriosis-consultant.co.uk) for info on how to treat endo properly.
I disagree, I don't think he's incompetent, in fact he listened to ME very well, which is the first time in ages! I know it's not a cure, and isn't successful for everyone. However I thing that endometriosis is a very personal disease and everyone finds the various treatments do help some but not others.
Hello.
Do you also have adenomyosis? If you do then having your womb removed will definitely help. But keep at least one of your ovaries at all cost!
What about your ovaries? Are they going too? I'm asking as your ovaries do a very important job. No only do they produce eggs but they're also the main supplier of oestrogen.
Oestrogen is important as it protects us in many ways. The two most vital ways are
1) oestrogen protects our bones and prevents us from getting
Osteoporosis.
2) oestrogen protects out heart and cardiovascular health.
Hysterectomy and removal of your ovaries will not cure you of Endo. When you take HRT any Endo deposits that are left will feed off the oestrogen in the HRT and will probably cause you problems again.
I'm sorry if this sounds harsh. But a hysterectomy will not cure you, if it did I would have one tomorrow!
Barbara
Hi thanks for your reply. I'm having both ovaries removed too, I understand their importance, however after discussion with registrar he said HRT is more advanced now and can be tailored in doses which will be less likely to trigger and remaining endo. I have had Zoladex with (and without) livial HRT and it worked ok. It's a way of testing out things first at least! My pains I am experiencing now are probably due to previous ops for removal and therefore having the hysterectomy will help as these will be removed. I'm 40yrs old, have been lucky to have kids and I just don't want to keep having repeated surgery year after year.
It sounds as though you have made an informed decision. And I know how it feels to be tired from fighting this disease.
I wish you luck with your hysterectomy.
Best wishes,
Barbara x
Thankyou Barabara, I really appreciate you taking time to comment. You're right, I am tired from battling! Every appointment, waiting to see unhelpful medical professionals etc takes its toll. Xx
I say go for it u sound like me I had hysterectomy last Wednesday I had exhausted all other options and thought it worth a go even if it only decreases the pain a bit as I had no quality of life beforehand . I am only 28 and had it done and am doing well the pain had eased until yesterday but tht is coz I have a complication and have developed a haematoma and have also got nerve damage because the endo has affected my sciatic nerve . Good luck let me know how u get on and if u want t private message me anytime for any reason even if it just a rant feel free. Good luck x
Thank you so much for your reply. I appreciate your offer of contact, I really need to get my head straight on this big decision. I think my current discomfort is due to scarring from previous ops and endo adhesions. I'm on the mini-pill at the moment so most of my symptoms are masked. Hope your recovery is swift. X
Thanks for the well wishes hope u get your head around it I did get my head around it but it didn't sink in until after id had it done and didn't seem real until I signed the consent form on the morning of the op. even tho I am having problems and pain and they think tht it endo related as they couldn't remove it All I don't regret it as the pain I was in anything was worth a go to try and ease it and I made my decision easily because I already have two gorgeous children one of whom is disabled so I willing to try anything to ease the pain so I can look after my kids without ending up crying in agony good luck with getting sorted
Hi
It is a really scary thought to undergo a hysterectomy. I had a total hysterectomy (remaining ovary and cervix) 3 weeks ago along with total excision of endo. This was due to the fact that I had suspected Adenomyosis and had had repeated laps and then prostap and hrt, so quite similar to you. I had the op by keyhole surgery and although I had a pelvic infection and problems with my bladder afterwards (prolonged my stay in hospital) I am now on the road to recovery and all endo pain has gone! I'm due to start back on Livial next week as I'm suffering hot sweats and hot flushes but once they are under control and I'm not as tired, I'm sure I have done the right thing. I hope all goes well, and if you wish to inbox me personally then please feel free to do so.
Take care
xx
Thank you for your reply, I really appreciate you sharing your experience with me. It means a lot to know that other people are going through similar experiences. I hope your recovery is speedy and that you continue to improve. X
I'm in the same boat...after 20 long years in chronic pain10yrs diagnosed) I've come to the final decision to have it all removed( very hard decision to make)
I'm glad your consultant agrees. Some doctors (mine included) want to try everything first, even if the patient doesn't want it. (GNRH!) I don't think it's because they think it's best for us but it's cheaper as hysterectomy is quite expensive.
I think as long as we have made an informed choice and know the risks involved, it should be our decision on wherever to have a hysterectomy.
Very frustrating........
Hope all goes well.
i didn't know i had endo till yesterday. It was suspected. For 6 months i was on Zoladex. pain reduced greatly and no period was a 9/10 became a 2/3 then got told i should of been on Zoladex and HRT so had that for 9 months pain got worse and was bleeding heavily for 2 weeks out of every month ! i was not offered a exploritory lao but a LAVH and removal of last ovary other was removed 2 and half years before due to Large Dermoid Cyst one with hair and teeth yuk. I am on Premarin. I got a Vault haematoma which was badly infected 4 weeks after hysterectomy had to be taken back to surgery and be cut to let it drain. Pain that i had b4 is gone can sleep through night without having to go loo i was waking up every 2 hrs b4. Had second consultant appointment and he finally confirmed i had endo and that was the cause of my pain such a relief to get diagnosis although slightly worried from what i have been reading about endo coming back. Although atm just focusing on recovery i am 8 weeks post op. Going back to work Tuesday on light duties. Was on 8 tramadol a day for the last 8 months so nice to be off them sorry for essay. My consultant is doing a scan on the 2nd May and has not discharged me yet. Seems like alot of us are in the same boat. Big hugs ladies xx
