Has anyone had positive results with a hysterectomy? I suppose you wouldn't be on here if you had?
I have read loads on this and heard many a story but still feel that if you have a healthy womb, you should not put your body through the stress of not only a major op but messing more with your hormones!
Really had enough now and feel like Endo has taken over my life (had for 30 years) and I am not the person I used to be and I don't like that person. More miserable than ever and feel selfish for not being there for people cos so tired and feel useless.
So many people that have had a hysterectomy not related to Endo, feel great - if only it was that simple aye?
Thanks for listening x
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silverandglass
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I'm 4 weeks post hysterectomy. Still taking regular pain meds but so far, so good. I had 12 months of Zoladex prior to the op, to help gauge whether a hysterectomy would be suitable for me. Hence, I feel positive about the future. I'm 41 and fortunate to have 2 fabulous daughters so my ovaries have been removed too.
Like you say, those that have had success are unlikely to still be on here. It might be worth you looking on the Hysterectomy Association site and joining their forum.
Hi Jane, thank you for your post. I am due to have total hysterectomy with cervix and part bowel removal next week because of stage 4 endo and adenomyosis and I've been trying to find someone who has had hysterectomy recently to hear their views. I unfortunately haven't been able to have any children as I've been battling with this disease for over 18 years. Thank you for your encouraging words, you have settled my nerves down a little for what I am about to experience. (Sorry for rambling on). I wish you well in your recovery xx
Thanks for your reply and I wish you every success to at last be pain free. I will definitely look on the website you mentioned. I do feel that as women we have to try to take control what will happen to us but at the same time, we get so desperate, that any treatment is worth a try. Fingers crossed for a pain free, normal life for you from now on x
I had a hysterectomy a few years ago for endo and adenomyosis and had my ovaries removed as well. Am now on HRT. I think the outcome is so variable for people it is really hard to give advice. I still have some pain and am waiting for an appointment at the hospital to see if they think it is still the endo. It certainly feels like it. However it is nowhere near as bad as it used to be and the other more severe pains I had (can't believe I used to think I suffered from excrutiating trapped wind when really it was endo!) have now gone.
However because I had adenomyosis (and therefore not a healthy womb) I don't regret having my it removed and not having those awful periods is a godsend. It's the loss of my ovaries that has been more of a problem for me - losing all those hormones overnight was a bit of a shock and I generally feel more down and lack sex drive etc. So if you go ahead and you can keep at least one ovary I would recommend it, though of course it increases the chances of the endo coming back....
Hope this helps a bit and good luck with whatever you decide.
All treatment is hit and miss with endo and it certainly does sound like it is back. I do always wonder if a hysterectomy may be the way forward as on further contemplating, when ever I have an op, the endo is always on my one remaining ovary, sticking to the back of my womb, which in turn is stuck to my bowel, where there are deposits there also. By eliminating the womb obviously this wouldn't happen. I do believe that also that if the endo continues to grow in the POD and bowel, I will still be in pain. I will probs just leave alone as I suggested originally as by your response, perhaps it is indeed better to keep what working hormones you have left in your body, well alone. I hope you find a solution to the pain and new conditions that are occurring (it took me years to finally give in and take stronger painkillers as I try to lead a healthy lifestyle and I am also taking anti-depressants as this has left me with so many anxieties and feelings of worthlessness) Take control and grasp onto the good days - good luck x
I think you've answered your own question - if hysterectomy was a cure, there would be cobwebs blowing through this board because we'd all have had hysterectomies.
But the fact is that it's not, at least not in a blanket sense. I can only speak for myself, but my endo is all over my abdominal cavity and binding all of my organs together; my gynae says that it's some of the worst she's ever seen. Removing my womb and remaining ovary isn't going to help that situation at all. Even the surgeon who claims that everybody can be cured through radical excision won't take me on.
If you have issues with your womb - if adenomyosis or fibroids are causing pain or heavy bleeding, and you've completed your family, then getting rid of it is a sensible option. But you need your ovaries, or at least one of them. If they are removed, you need artifical hormones to do the job they do naturally. And guess what - that HRT will hunt out and find any tiny speck of remaining endo and you'll be right back to square one. Maybe not within weeks, or even months, but I have read stories of ladies who had total hysterectomies years ago who have found their endo back with a vengeance.
It's an individual decision, and if people think the risks involved for what could turn out to be a potentially quite small window of freedom from endometriosis are worth it then great. If it works, then even better. But that's the exception rather than the rule.
This disease is rubbish, isn't it? Sending massive love and hugs
Yes the whole thing is rubbish. I think I have made up my own mind about this and due to having the Mirena (which ended the lifelong pouring of blood) I feel I only need to address the pain and down feelings i get. My one remaining ovary is always stuck to my womb by endometriomas and my bowel the same with deposits in the POD. Therefore, if I remove my womb, I feel the endo will still be around to stick other parts together eventually. I am having a hard time with my emotions and how I feel about the whole endo at the moment and the fact that no one understands. I accepted this years ago but lately, since having another operation and being in constant pain for 6 months, everyone around me keep asking when I will feel better and have high expectations of me. This has made me question myself so much more. Even when I have explained in the past (and now) I feel everyone just thinks I am being lazy. Not sure how you have been in the past but on my 'good' days I do so much that when the Endo pain hits again, it completely floors me. This on top of not being able to sleep or cope with doing much due to weeks of the blasted non sleeping. I have always done what I can, when I can, strive to do the best I can, even when I have doh moments from brain fog. I have worked hard and been penalised. Long story but my last job (which I had been in for 6 years) tried to get rid of me due to time off by offering me £3000 to leave!! I stayed on as didn't want to leave but never got the promotion I felt I deserved 3 times! I left and found an even more rewarding job but couldnt stay due to working longer hours and needing to be on top form as dealing with child protection. It was the job of my dreams and what I had worked so hard to get. It is horrible and demeaning to be made to feel like this when noone realises how much harder you have work to be able to try to live a 'normal' life, work and bring up children, whilst trying to stay sane. Sorry to go on, but I really am at the end of my tether. Keep strong and wish you so much happiness. I am slowly sorting this out myself as again, doctors do not believe you either. With more research and realising not to take their words as gospel, I am getting through this in my own way, at my own pace. I know I have got to be strong to brush off what I think other people are thinking about me, Small steps to a better you. Love and hugs back and a big thanks for your reply xxx
I'm 47 now so I should be at the other end of this particular tunnel. Endo took away my job and research is now suggesting that although at the time I was told it was nothing to do with my recurrent miscarriage problem (18. Eighteen...) endo was probably at the root of that. Couldn't do my job, couldn't be a mum, and then I had a massive nervous breakdown which left me clinically depressed to this day, and agoraphobic. This bastard disease has completely taken away my life. But, like you, I 'accepted' it for what it was, and for a few years, after my particularly problematic left ovary was removed, I trundled along with it all with just the 'usual' pain at period time. Luckily I have a FANTASTIC gynae who monitored me every 6 months to make sure that right ovary wasn't growing cysts to whom I could pour out all of my worries and frustrations and together we tore into the disease and put it in its place, in words, anyway.
And then the menopause started, or at least stirred, and things kicked off again. The first sign was a Cyst Out Of Nowhere on an ovary which had been quiet for 10 years; we zapped it with Zoladex and it disappeared, but the endo was on the march. I started experiencing level 6/7 pain 24/7, shooting up to level 10 at ovulation and period time and any other random time in between. We went through every painkiller known to man and the only thing that touched it was pethidine. My GP was horrified, the pharmacist refused to prescribe it so I had that fight on top of everything else; luckily my gynae came through again and wrote strongly worded letters and it was sorted.
But on Monday, when my mum and dad went to pick up my prescription (what with me being agoraphobic, remember) the chemist told them that Pethidine has been discontinued. I had to phone the doctor's surgery because I had none in the house, and then I had to phone around every chemist in the area asking if they had any in stock, and then I had to organise a new prescription, all with one hot water bottle clamped between my thighs and one at my back. When I'd found some and the situation was resolved (for now) I was chatting with my mum and dad about what would happen now, painkiller-wise.
And my mum...MY MUM, who has lived through 21 years of this with me and is supposed to...well, you know...was more worried about the fact that any new painkiller might be addictive like the Pethidine, and won't even the Extra Strong paracetamol work?
And that's what made me crack. Not the pain that the previous day had me being sick, and has my husband spending hours rubbing my back for hours because God knows there's no way he's getting any sex at the moment, and has me missing the family occasions I could fight through the agoraphobia to get to. It was the fact that my mum, who has had to call the doctor for me before, who has held my hair back while I've been sick, who's sat at my hospital bedside with my husband, actually either doesn't appreciate how bad this pain is and thinks a couple of aspirin will do it or worse doesn't believe me. My mum. Another woman, bad enough, but MY MUM. Even as I stared at her in disbelief I knew that her concerns were legitimate because these painkillers are hardcore....but when I am rolling around on the bed or the bathroom floor in agony the very last thing I am considering are the moral implications of a drug's addictive potential. I just want the pain to stop, and stop NOW. That's my priority, and it should be hers....
So yes, I know exactly how you feel The menopause is not a barrel of laughs in itself, even though I've had several 'practice runs' over the years with the Zoladex, but yesterday I was so low with it all that I stayed in bed all day and sobbed. My gynae says that along with having some of the worst endo she's ever seen, I am her most stoical patient. I'm thinking she's not going to see that side of me tomorrow.
Sending even more massive hugs. It's crap. But WE know that. And really, when all is said and done, we only have to answer to ourselves.
It is so hard, isn't it? If we didn't have this place to share, I don't know what I would do. So sorry your mum doesn't get it, one of my sisters told me that if I was stronger mentally I wouldn't need any painkillers at all, and that I only have time to be ill because I don't have children. Yep, thanks for pointing that out, sis. Maybe I don't have children because I am ill and have so much pain you cannot even imagine it.
Anyway, what can you do except pick yourself up and keep going the best you can? I am trying to build up my courage to go back to the GP and say I want referring to a different gynae in a specialist centre for a second opinion (my current gynae believes switching off/removing my ovaries is the only answer.
I have two children now 14 and 11, I would rather give birth 20 times than have the never ending pain, your sister might be lucky enough to have children, but I have to say having this horrid illness has been the worse ever thing that has happened to me, and I would wish it upon anyone.so please ignore what your sister said to you, bum holes
I have a baby and I have to have others help me raise her my IN-LAWS without them I don't know what I would do.So not having a child or having a child is not an excuse.This condition sucks the life right out of you it is horrible I never knew I had this I just knew I was infertile or so i thought for 10 years.Until i met my husband and our 1st time together we got pregnant and I was in shock.It really was like winning the lottery now that I know about this. i never knew I had this until my baby was 18 months old.Now I feel guilty i cannot do everything. I have to take pain pills and my pain is 6-7 or 10 I have stage 3-4 endo.It is everywhere and my gyno doctor forgets I had a baby 2 years ago because of how bad my condition has progressed.I have SLE LUPUS along with other conditions . I need pain killers and I had a baby naturally this pain is worse then child birth.If your sister knew that I bet she would not be so quick to judge you.I know I had both and for me now the pain is constant .It just makes me upset that other people think they know what you feel in your body.They do not know they could never know.Being a mother or not does not make you stronger or weaker!
Look for the Nancy nook support forum on Facebook. She's a nurse who has specialised in endo after getting a hysterectomy herself. There is alot of really good info on her forum. It's American but all the latest research is dere.
Also a hysterectomy is really only gonna work if u have adenomyosis. If you just have endo then find a good excision surgeon. Once the endo is completely removed them you should have no regrowth according to the latest research.
Endocities is another good source of information as is endotropolis. Twitter is another great source.
I'm 33 and supposed to have surgery in less then 1 month.I have a daughter 2 years old.I was told when i was 17 I could never have a child but I had a period so i knew it was a possibility just a very small one.But now that I have 1 Ii feel like I just want everything out even if it is a 50% chance that it might work because I cannot do normal things .Like house work just normal things and it makes me feel guilty I stay with my daughter 24/7 I take care of her .But I cannot take her grocery shopping alone or take her for a walk to the park alone I always need help and I hate that.It is scary but I signed to have a full one as well and I am getting bad feedback from others who have had it done.They are suppose to take my ovaries as well.I have horrible pain in my bowels Ii'm stage 3-4 and it was seen on my larp surgery on my intestines.I'm scared it might be for nothing after reading all of this.
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Sending massive love and hugs
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