Hi all. Was hoping to get some feedback on how any of you have been since getting a hysterectomy.I'm due to get a total clearance at the end of the year for endometriosis and adenomyosis. I'm hoping it will really help but fully prepared for the worst.
I know results are mixed and some women see no difference and some end up worse.
I'm so sick of my family and friends assuming I'll be cured immediately after this "little operation" and everything will be wonderful forever more.
One person actually said to me, "after your FIXED......"
I want to hear all your stories. The good the bad and the ugly.
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KM1986
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I hear you, I’m awaiting laparoscopy next month and loads of friends are saying why not whip it all out while they are there and a few months ago I didn’t know any different but reading here on the forum I realise that the endo (if that’s what it is) will always be a problem.
I had the same with my thyroid condition, you just take a pill a day right and that’s it, that’s you fixed. Er….😐 No, not that simple, it’s a lifetime of monitoring and adjusting and planning and just coping. Bah 🙄 anyway, I know what you mean and we just have to take a breath and educate them slowly. 🙈
I have not had a hysterectomy yet. Still wondering if I should or not. I have endo and adenomyosis. Countless times I have heard that this will cure me, females seem to be the worst at this unwanted advice, men are much better! My mother in law who had a hysterectomy many years ago has said she doesn’t understand why I don’t want one (I’m not ready), it will seemingly solve all of my problems. Don’t know why people feel they need to give me their opinion, when I don’t ask for it.
I'm going through this at the moment with my husband who does not understand the scale of the operation I'm about to have or that it won't cure the endo. It may actually wake the bloody endo up and i could be worse off as I'm having it for constant bleeding not pain. I think you just have to let them think that way and don't try to fight it as it's exhausting. We are the ones who do the reading and research not them and it amazes me that a disease where one in seven women are said to be affected is still relatively unknown x
my story is positive. I had extensive removal of endometriosis and removal of my second ovary and fallopian tubes but NOT hysterectomy as my surgeon (young female and extremely competent in a specialist centre) wanted to try and keep it. I had ‘stage 4 deep infiltrating endo’ with uterus tethered to bowel. I was in surgery for 7 hours. I have not looked back since - despite the expectation that some remaining bowel lesions could cause further problems.
I had severe stage 4 endometriosis. Was in surgery for over 6 hours. The only reason I had a hysterectomy was because I had adenomyosis, fibroids and cysts. It is not a small operation
It is also not like a run of the mill hysterectomy. They are cutting out endometriosis deposits in your whole pelvic area, putting bowel back in place and trying to excise your ligaments ovaries, bladder etc. Mine is a Positive story so far 11 months in I have not looked back. I still have 1 ovary. I am fully aware that endo will and can come back.
I certainly don't miss any part of the period cycle.
So my advice is to not rush your recovery. It was not the standard 8 weeks for me. It took me 4 months to get back on my feet. Even then, I had to take it slow.
My story is a positive one. I had a full hysterectomy, endometriosis excision from my bowel, bladder and ureters as well as a rectal shave 9 weeks ago. I woke up pain free, with the odd niggle from surgery pain. I did have to have a ureteric stent for two weeks, which caused a lot of discomfort, but once it was out I haven't looked back.
I do still get very mild cyclical symptoms with my nose, bowels and heartburn, but these are manageable and no where near as bad as they were before.
I am on HRT now too, but I'm ok with this, before the hysterectomy I couldn't tolerate synthetic hormones!
My fatigue has gone. I am able to do more and I actually feel like I have my life back.
I hope that this helps and that you're not waiting too long for your surgery!
I had a full hysterectomy and oophectomy which was for severe endometriosis adenomyosis with bladder removed from uterus pouch of Douglas obliterated by scarring tissue. Four months on still swollen and last week the low pelvic pain that comes on with wanting the toilet had it previously with periods perhaps twice a year but it's been so awful the pain swelling even more, being treated for water infection as have blood on urine had CT scan for me I've yet to be glad I had it.
Everyone's different so pleased don't let me colour your view. I've not taken hrt as I've been so scared it would come back.
I had a total hysterectomy in October 23. I’d had issues for 20 years, multiple surgeries and treatments. I’d had 5 miscarriages and a ruptured ectopic. Sadly no children. I’d been on zoladex multiple times. Before my surgery I’d had zoladex for a year. This stopped working and I started bleeding again. Initially I was fobbed off as it being a one off. Oh no it was here to stay. I was changed to prostap. Wasn’t told I had to order it on perscription myself and turned up for the injection none the wiser. This had to be sorted out. In the end I bled constantly for 7 months prior to my surgery. During the surgery they found my womb and bowel fused with a large plaque of Endo. My ovaries were also stuck to the abdominal wall. It became a medical mess the bowel was cut. It was 50/50 I’d pull through. They got the emergency team and the bowel surgeon and they performed a colostomy operation so I now have a stoma bag. This is being reversed in March after over a year on the waiting list. They also found out after 20 years that my womb was “ bumpy” which is why I couldn’t get pregnant easily or carry a pregnancy. A kick in the teeth yet again from my failed body. All this thanks to a short horrible word Endo…..
So I feel your pain, I know hysterectomy is not classed as an Endo cure, only a symptom cure. From the hysterectomy side I’m doing great. On hrt patches twice a week and very rarely does the internal heating switch on! I also got cancer all clear last January post operation testing. So I’d still say I’m glad I had the surgery and even though I hate my little belly gremlin it saved my life and allowed me to say yet again Endo you will not win.
Best of luck with surgery hope you get the support you need afterwards.
Hi sorry to say this but a hysterectomy won't cure your endometriosis, my friend had one and it didn't make any difference. Sending you a safe hug too ❤️🤗
Hi KM , I've had same since going on surgery waiting list last summer , I'm hoping I do actually get fixed , but have found it hard to explain to people at home and work how complicated the condition is , hope your treatment goes as smoothly as possible for you
Thanks so much everyone for your responses. A lot to take in. By the time my op comes, I'll have been on the waiting list 2 years. Its unbelievable. So I've had plenty to think about. I do believe that the majority of my pain comes from my adenomyosis which will be removed with the hysterectomy. So I just have to pray that this alone will class it a success.My biggest fear is that after the op, I again at some point get symptoms and that no one will believe me medically and that my family and friends will just get sick of me and think I'm mad. However, I'm worrying about a situation that may never happen.
There's not many illnesses that patients are treated with such disrespect as endo patients.
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