Hystectomy or not

[joanneholden]

Hi Ive had previous treatment to remove endometriosis 2 years ago a cyst and poly removed at the same time. I have since tried injections for 5 months to force me into false menopause numbers types of pill the marina coil and 6 months ago had an ablation done. I am still getting pain mostly in my right side my consultant has given me 2 options have my righr ovary taken plus all endo cut away or a full hysterectomy with removal of both overies. Im really undecided as if have the first could still end up having to have hysterectomy in the long run. Has anyone had the removal of one ovary and endo done and if so how have you been and did you need further treatment. Any info advice much appriciated

[Milly2014]

Morning, I'm of the same at the moment. The pill isn't stopping any pain, in fact making it worse,, I'm waiting for my second lap and don't want to coil having read all about it. I'm 26 and has made the decision about no children a very long time ago they are just not for me and wondering about a oophorectomy. These are all such rubbish decisions we have to make without really knowing a lot

[joanneholden in reply to Milly2014]

I have tried Merina coil twice and it totally was not for me my emotions were all over the place and i had break through bleeding all the time. So I understand you not wanting to have. I di know others who love it but none have endo. Sometimes you just wish someone would say this is what we need to do instead of giving to many options when we dont have medical training ! Wishing you the best of luck with what ever option you choose xx

[nigel55]

Morning. I have had hysterectomy. I had it last year. All the physical pain from endometriosis has gone. I still have a bit of pain sometimes from adhesions, which they said I would have.

My emotions wasn't good after I had recovered physical. My emotions are getting there now. I still have down times but it takes time.

It is your decision but this option was best for me and I am lot better than I used to be. 😊

[joanneholden in reply to nigel55]

Thank you for your reply. Wonderful thing female emotions arnt they😣. I am swaying more to having everything taken away I know the more they go in and out it will cause more scar tissue which causes pain in itself. Glad it was the right thing for you and you are no longer having a lot of pain. Hope your emotions settle soon. I love using complementary therapies also. Reiki is a wonderful relaxing therapy that works on the whole person not just physical symptons also mindfullness meditation. Both really help me with emotions. Wishing you the best of luck on your journey x

[woolston27]

Hi

I am about to have both my ovaries removed. It was going to be one ovary but I decided that in the long run I wanted my life back. We tried IVF and the drugs made me worse and now the other ovary is effected. I am fed up with the pain killers, and bowel problems so I decided to go for it. Its scary but I don't want to be back in this position in a year needing more surgery.

[joanneholden in reply to woolston27]

Im thinking along the same lines as I dont want to end up needing another op in a couple of years. Im also thinking in they remove one will it then just start to grown on the other. Good luck with your op. Wishing you a speedy recovery xx

[Marcia71]

I'd go with ovaries first but make sure all endo is excised

I had a hysterectomy and ovaries out in Feb 2015 and in worse pain as endo not excised at time so please make sure whichever option you go for you are with a bsge surgeon and they excise all endo at the time.

For more info on hysterectomy take a look at hysterectomy associations website as loads of useful info and ladies in some situation to chat to.

Good luck

[joanneholden in reply to Marcia71]

So sorry to hear you are still in pain and all endo was not removed . You think that because you are unde a gyny they will all do the same unforunatley that is not the case. Im now under a new consultant who is a endometriosis specialist. He explained and my last appt that he makes sure he cuts away all endo. He has been great compared to my last consultant taking the time to listen to what you have to say. Which makes a big difference. Thank you i will look at other sites. Good luck with your future treatment. Xx

[kelbel]

Morning Joanne,

I had a hysterectomy last February 2016, but decided to keep one ovary as I didn't want to go straight into the menopause if I had both removed.

I used to bleed 24/7, even when I had the fake menopause injection I still bled throughout, I was in constant pain, fatigue and truly didn't want to live any more, I could see no light at the end of the tunnel. I have lost 3 children owing to miscarriage so to make the decision to have a hysterectomy was huge. I ended up having my Fallopian tubes removed, my womb, my cervix and an ovary. In the end the operation had to be done via cutting me open as my womb was so swollen they couldn't get it out via a laperoscopy, so I'm now sporting a nice 12" scar from one side of my tummy to the other! ... but all that said it was the BEST decision I have ever made!!

I now have no pain, no bleeding, my fatigue has gone and my husband and I can again make love , pain free!! I never realised there should be no pain involved when making love! It used to be agony.. .

I now have my life back again, the "old Kelly" is back. She disappeared a long time ago, I would never laugh or go out, I'd lost all my friends as I kept cancelling on them, my life revolved around "trying" to work, and being in bed!!...

what ever you decide just make sure it's right for you!... it's a massive decision to have a hysterectomy, but for me the BEST I could have ever made, I am 41 and like I said have no children, but I have my life and that's more than I could ever ask.

Good luck on your decision and if you ever want to pm me then please feel free.

Kelly xxx

[joanneholden in reply to kelbel]

Hi Kelly so sorry to hear about the loss of your babies. Sounds like you have had a really rough time of it all. Im so glad your life is now back on track and you are living life to the fullest again. The fatigue is a major thing for me aswell. The menopause is the only thing putting me off having everything removed. Im 44 this year so probably many years to go though. Thanks so much for sharing your story. Wishing you a happy and healthy future xx

[Arlene48]

Hi there, the best option is a complete / total hysterectomy including cervix, ovary , falopian tube. As leaving one ovary could give you further trouble ahead 4-5 years from now ,you don't want that do you . It's a huge decision for you to make but that's the right way forward! It's a lifestyle choice as well as you wanted to be pain free. Are you a risk taker and want to take control of your life? Or you just wanted to wait and see ? Take your pick .

[joanneholden in reply to Arlene48]

Thank you for your reply. The last thing I want is to end up having more problems in a few years and more ops. I am thinking the full op is the way to go

[NH88]

Hello. This is the 1st time actually writing in a site like this.

I've struggled with the condition since I was 12years old. I was shifted from pillar to post, had many different doctors, medication and was made to feel it was all my fault for not being able to handle the problem. Each month I would bleed heavily, with clots. I would have problems with the bowel and issues with urination. I would have blinding headaches and sickness to such all degree that although I needed to take medication with food, eating would make me throw up. I had back pain and pain to the sides as well as the front. I could collapse through the pain and often could black out. I would have the sweats so bad that it was like a fever and the pain would be a constant clawing stabbing, and hit you like waves. I couldn't be left on my own as it was needed help to go to the bathroom. Hot water bottles would last at most an hour before they needed to be replaced, meaning it was was burning myself in an effort to stem the pain.

My older sister had it even worse and even through multiple surgery was still unable to get any relief. A doctor once even told her it was all in her head! She had a full hysterectomy at the age of 36 after having 2 beautiful children. But she still has to live with pain as it is ingrained in her hips, pelvis spine and organs because no one would help her sooner.

I am 10 years younger than my sister and last November at the age of 27 I had a full hysterectomy. Removal of ovaries and cervix as well.

I had asked to be refered back to gynaecology but was told that the waiting list was 6 months. So i suffered through having to pay privately and the 1st time round and told to have the coil as was recommended by my gp because I was not old enough to have surgery, but would need to be put out to have it placed in and taken out, as my tilted womb would be a problem, and as smear tests were painful and difficult there was no way in could have it done otherwise. But the results for this with me would be difficult to determine. She told me that she didn't believe I had endo. I had already had an into depth conversation with my gp about not having the coil. I knew intent would be on no use to me, and after tri cycling the pill and having a retinal bleed, I had run out of options. So I went to another private consultant. I was treated with respect and was listened to completely. I had already done my own research and was aware of the options. He said there was no doubt that I had endo and the options for me were as follows: surgery to remove as much of it as possible, which would give me 4 years or so before it could return, or a hysterectomy. I Was placed on prostap injections for 8 months so I could decide. I chose the hysterectomy, with ovaries and cervix removed. I was told there could be a possibility of a colostomy bag if they needed to remove endo from the bowel, and it would be there for at least 3 months. I didn't care.

The surgery went well, no colostomy bag needed although it was trickier than antisipated as it was millimetres off the bowel and would have eventually fused and been absorbed it left. The endo was spread right across the back of the womb and up towards the right fallopian tube. All the scans I'd had couldn't pick it up. But it was there and it was spreading. Although I had an incident after surgery where I had a hemorrhage as the pool of blood inside came out, it was preferable to having to go back down to theatre to have it drained.

Through all I'd gone through I don't regret my decision. Even though I'm on HRT estrogen only, there isn't any endo left. I'm free for the first time in my life from having to worry about not being able to keep my job, I'm not in pain 3 weeks out of the month ( there was the pain before the period, pain on the period and then pain after the period).

I am SO SO gratefulto the only consultant that would listen, and not see just my age, or a mental case. He saw the pain and the suffering and gave me options for me so that I can live my life.

If you need a consultant who makes you feel comfortable and will listen, I can recommend Mr A. Griffiths at the spire. He even rang me back himself, even before I got a consultation, so as I was reassured that regardless of age (as that was one of the main issues no one wanted to discuss certain options with me) he would listen to what was wrong how I felt what I thought and treat me as an individual.

I wish you good luck whatever your decision, everyone is unique and as such needs to do things in a way that's best for them and the circumstances they are in.

Never be afraid to ask questions over and over again and from different people until you are satisfied.

[joanneholden in reply to NH88]

Thank you for your reply and for sharing your journey with me. Im sorry to hear both you and your sister have had such a hard time getting people to listen to you.After being in pain today again im 99% sure im going to go ahead with the full op. I also have ulcerative colitis which is inactive at the moment and has been for a number of years thankfully but this also makes me worry more that it may spread to my bowel if I only have the endo and one ovary removed. The consultant I now have thankfully seems to listen.

Wishing you the best of luck for the future. Thanks again x