Should I have a hysterectomy

[CLS1]

I am 38 and have been suffering for many years from endo. I have tried various treatments available but as usual none seem to work appart from the fake menopause injections but I have had 2 and they wont allow me any more. I was offered a hysterectomy, including removing my overies when I saw my consultant before xmas & I am going back next week to tell him my decision. I am not opposed to having the operation if it works as i am lucky enough to have 2 children but I cant see the point in having a major operation if it is not going to work but I really don't want to turn down the chance of being pain free & getting my life back. Has anyone had a hysterectomy and had a happy outcome ?

[Lou_R]

I had a hysterectomy three years ago (at 38) and wish I'd done it sooner. I don't have children and it was a huge decision, one that I could only bring myself to make when every other option was exhausted. I still have my ovaries, so for the first time in years I was off hormone medication. The endometriosis caused a lot of damage (the previous six ops probably didn't help either) so it has taken me a while to get my life back on track but for me hysterectomy equals no more endometriosis. If you trust your consultant and you are comfortable with the decision then go for it. GOOD LUCK!

[Lizzie71]

Sorry I don't mean to burst yr bubble but I had a hysterectomy keeping my ovaries when I was 37, I am now 40 and been suffering mildly for about 8 months now and each month it gets worse and worse. I felt on top of the world for a while, lost weight, happy. All I would advise is don't keep yr ovaries I know yr still young ( that's why my cons said to keep them) it would be interesting to know if I had done the same would it have come back. I wish I had know about these sites etc and known a lot more last time.

Good luck whatever you decide xxxxxxx

[lainey37]

im 7mths since full hysterectomy ,been left with constant pain in leg/groin pain ,bowel pain .I know im still healing inside ,but im so fed up now .Waiting on an ultrasound and MRI scan to find out what is wrong x

[Chrissie66]

Why won't they let you have any more 'fake menopause' injections? Is it a particular problem for you, because in general, so long as you have a break and as far as I know, there isn't a limit to them; I spend six months on them and six months off....

Hysterectomy is not a cure and very often leads to more problems; I have only ever spoken to one person for whom it's worked. You need to think about it very carefully. But first of all, ask about the injections, as I said, unless you have a particular problem, they're not giving you the right advice. Particularly as it worked for you.

[Minnerva]

Hmmm really difficult to advise on this one...

I had extreme pain from endo and was advised to have a hysterectomy (at 41) but I opted to retain one ovary in the hope of staving off a premature menopause for a bit longer.Within 3 months I was experiencing tremendous pain,more than I had ever had before and ended up on bucket loads of pain killers every day as the endo had multiplied and spread and my remaining ovary was covered in multiple cysts-all this at an alarmingly quick rate.I had to go back into hospital and have my remaining ovary removed and since then I have been relatively pain free and able to work again (I am now 43).This is great but I am left going through a surgically induced premature menopause now which is not so great.I have chosen not to take any form of hrt as my greatest fear is that the endo will return with a vengeance (oestrogen feeds endo and that is the main component of hormone replacement therapy).I am suffering from several unpleasant menopausal symptoms but my husband keeps reminding me of the excruciating pain that I was in pre-op which helps me to regulate my emotions and feelings towards them.

Hope that rambling makes sense-the decision has to be based on the pain that you are in I think.If you have little or no quality of life due to endo then perhaps it is the best choice for you.But please think long and hard as it will affect you.

I think I DID make the right choice although sometimes it doesn't feel like it-mainly when I am feeling sorry for myself but as I am able to work and function relatively normally I have come to the conclusion that I didn't really have a choice.To be pain free or not to be pain free-that's what it really comes down to is it not??

Good luck with whatever you decide.xx

[Fletch]

This is an issue that I too am considering, but I do not have children... so it's not an easy decision to make. There is a blog that I follow, written by a woman who has had a hyseterectomy, and she writes very candidly and honeslty about the issues that have arisen. Here is the link: myendojourney.wordpress.com/

I have found it helpful, and she has had a positive experience from it.Sometimes these sights can be a bit 'doom and gloom' and not many people write about having success stories, but she does. It goes to show, there is light at the end of the tunnel. For some people anyway. I know it doesnt work for everyone. We can hope though!

Like you, I ask myself "what if I go through all of that, major surgery, and it doesnt work?". What a massive risk to take if the outcome is no better then what I feel right now. But I suppose sometimes in life, you have to just jump in, take the risk, and hope for the best. But it's definitely something that needs to be thought about in great, GREAT detail and depth. If you havent come to a decision by the time your appointment comes up, just say you need a bit longer. Take your time.

Also, re Prostap (I assume thats the injection that you are talking about), I spoke to a nurse when I had my last injection last week, who told me that she has been giving the injections to a woman for the last 10 years! So saying you are only allowed it twice is absolute nonsense. It sounds to me as though they are concerned about money! You know the NHS. Each injection is £75, so they dont want to keep giving and keep giving.

The injections have been working quite well for me, so I spoke to her with concerns about having to give them up in 6 months. I said I didnt want to go back to how poorly I was before. She said that it wasnt an issue. She said, under the discrecion of the consultant, you can have them for as long as you like, but, that you have to keep having bone tests at the same time to check that its not effecting your bones. So, my advice is; dont take no for an answer. Because it is possible! And if they still say no, then get a new consultant... who will allow you to keep having them. It'll give you more time to think about your hysterctomy too.

Hope that helps

Aimee xx

[CLS1]

Thank you for sharing your thoughts and experiences.

The injection I had was Decapeptyl, which i had twice 3 months appart. I was told I could not have more because of the risk of bone weakening. The last one I had was February & appart from a brief spell taking Cerazette in October which caused very bad side effects I have not been on any treatment since then, so you can imagine the levels of pain & discomfort I am in.

I recently changed consultant - only due to the fact that I needed an emergency appointment as I was in so much pain and I must say I feel much happier with this one.

He has explained to me that yes he could try a few other treatments but he could not guarentee that any would work. His thoughts were that at the moment I do not have much damage/scar tissue to my bladder, bowel etc so he would rather do a hysterectomy sooner rather than later so that the operation would be a sucess and he predicts that I should be about 80% pain free, which feeling like I do has got to be a massive improvement.

I realise that removing my overies is not ideal at my age and after experiencing menopause symptoms after the injections I know that I am going to have an unpleasent time, especially as I am determined that i would not take HRT but instead try alternative treatments - although my husband & children will probably move out.

I feel that after looking at the facts I don't really have any other options but to have a hysterectomy but that wont stop me having a few more sleepless nights before I go back next Thursday.

[Hidden]

Hi

I am in the same situation as you are unfortunately. I went back to hospital today after having the mirena coil in for 10 weeks and have been bleeding constantly and in pain most of the time. I managed to get to speak to the specialist endo nurse who was lovely and did recommend surgery and a full hysterectomy, which the consultant agreed. She went through all the pro's and con's and I know menopause can be bad but I said, I'm going to have it one day so why not whilst I am still in my 30's.

Like you I have 2 children and feel very lucky to have them, but I am going to go ahead and have the full surgery. I think we get to the point where you really can't keep on trying different things that either work for a short time or make us worse.

Good luck with whatever decision you come to xxx

[JEWELS]

Hi I had mine hysterectomy at 42 ovaries also so went into menopause straight after surgery.. I've been very lucky and been on hrt patches low am dose, and not had any issues with night sweats.

But again im not pain free.. Altho I have no visible endo.. The pain I'm getting now is all scar tissue trapping my nerves..

Everyones different with this but scar tissue/adhesions can cause problems after a hysterectomy... At the end of the day I still don't regret having mine as it was making me to poorly..

Best of luck and I'm sure you will decide whats best for you xx

[figgy]

Hi, I had a total hysterectomy at 44 just over a year ago and I don't have any children so I had a difficult time making the decision. I did have a few complications and have just had another lap and more endo removed just before christmas but despite this the quality of my life has improved ten fold after over 25 years of monthly pain and heavy bleeds. Yes I am still recovering and I don't expect it has gone completely but the pain is completely manageable for now.. Because I had both my overies removed I did have sergically induced menopause which together with the aftermath of the surgery was an emotional time. I tried a number of HRT treatments which didn't work for me but have found the gel suits me as I can control the dose. Everyone has their own views on HRT and the rights and wrongs of it but for me I am happy that the dose is low, my bones are protected (and the wrinkles are kept at bay for a little longer!!) the hot flushes and mood swings are under wraps and quite frankly I feel like a new woman. I cannot stress the importance of a endometriosis specialist consultant (there is a register) they are so much more skilled in this field than a general gynocologist, mine is the best thing that ever happened for me.

Good luck with whatever decision you make xx