Endo and menapause specialist

[Thecurse]

I'm 39, had hysterectomy and now early menapause. started hrt ended up in hospital as it fed hrt around bowels. Can't function without something and no specialists in hospital can deal with my case. can anyone recommend a specialist experienced gynea in menapause and endo please. Southmead hospital is quite close but I'm prepared to go anywhere.

[Marcia71]

Hi there. I see specialist at Guys hospital as she is in charge of Endo and menopause clinic so sounds like a good match for you. I had my hyster when I was 42.

There's a new facebook group set up by Linda (known as Lindle on here) and we can discuss actually specialists there so it maybe worth joining:

facebook.com/groups/1148144...

It is a closed group called EndoRevisited UK. I can then tell you name of specialist as I'm not allowed to on here as run by charity. You may also get names of people a little nearer to you.

[stacynicole in reply to Marcia71]

Marcia,

I wanted to be in touch to learn more about your experience in having a hysterectomy. I am 42 and will be having one on 5th Dec. I will go into menopause and am worried about it. If you would be so kind to let me know how yours went and what HRT you are taking and how they are, I would be most appreciative.

Thank you,

Stacy

[Marcia71 in reply to stacynicole]

Hi Stacy,

Happy to be of any help I can be. I should warn you I'm not a positive example!

I had my TAH and BSO in Feb 2015 due to adenomyosis, endo, fibroids, cysts, and as I'd had a bad smear before. I'd only learnt in Oct 2014 I had endo when this general gynae did a lap for fibroids and cysts. So I went with his recommendation to have the full op. I wish now I'd found a BSGE surgeon as they would have excised endo at time of hyster, whereas mine left it behind as he thought it would die off! So I'm still in loads of pain.

As to HRT; hospital put me on livial as I left and that did nothing for me so I followed up with Menopause clinic. They had me on the patches Evorel Conti which worked well but I didn't like patches, so I'm now on Kliovance which is a tablet. This is a combined HRT (oestregen and progresterone) and I was told by specialist you need this combination as had endo in the past. Other ladies who have hyster just have an oestregen only one and are fine - this can make endo regrow so I would avoid. I'm now an advocate of HRT as its helped with hot flushes, night sweats, insomnia, certain amount of mood swings, all of which were horrid from the day of my op. So do please get some HRT as it helps with bone strength and heart health as well as all these other horrid parts of menopause!

I found the hysterectomy association invaluable for hyster support - hysterectomy-association.or... and the forums really great.

Anything else you want to ask, please do.

Marcia

[stacynicole in reply to Marcia71]

Thanks so much and for replying so quickly. My surgeon is with a BSCE clinic and I've been told he's one of the best. I will also have a bowel surgeon as the endo has made my bowel attach to my uterus. I have ando also in addition to severe endo. I'm in pain all the time -since last November. They have advised taking it all as if I don't now, I would likely need to have it later and it could be much more complicated given bowel bit. Have you read about HRT with estrogen and a bit of testosterone? I've read in some research that this could be an option for endo sufferers and a the testosterone could have some small positive side effects. How long did you stay in hospital? Thankfully I'm having this done privately as my last lap (Feb 2016) in the hospital was like a scene out of 'One Flew Out of the Cuckoo's Nest'. They've said I'm likely to stay only a day but insurance has approved 4 days just in case.

Thanks again!

[Marcia71 in reply to stacynicole]

Wow a day in hospital after such major surgery! I guess it does depend how its being done, I was done via incision, and stayed in 3 nights and to be honest I would have liked to stay another night at least. Just as hospital beds are so much easier to get in and out of - you really have no core strength left so getting in and out of bed is tough, and in and out of a chair/sofa not easy. Look up on line for some exercises and ways to move after a hyster as I'm really glad I did. I do live alone and had sorted out help for when I got home as you really can't do anything for the first two weeks. I couldn't even lift a kettle, or open the freezer door, or open the oven door as I just didn't have the strength. It took a long while to be up and properly mobile and able to lift things. Be really careful as it takes a good three months to heal your insides and you can't see that, and may well feel ok, but your insides aren't and will complain at a later date.

I had mine privately and it was nice to have my own room and TV! Although I did spend a lot of time sleeping those first few days as the anesthetic tends to affect me that way.

I had heard about testosterone in HRT but the menopause clinic didn't put much weight on it, saying a combined HRT would give as much benefit.

Sounds like you have excellent advice and best to have it done sooner rather than later and hopefully get you out of pain and just feeling better in general.

Best of luck

[stacynicole in reply to Marcia71]

Thanks again. I'll check out the exercises. And it's good to know that I won't be able to do anything really in first couple to three week, or at least prepare for that. Unfortunately this will all happen over the holidays.

[Thecurse in reply to Marcia71]

I've had exactly the same as you and more, ended up in hospital from evrol patches as endo has grown back And was agony. now on tibalone but in dreadful pain daily and off work still. hope to see endo specialist soon as normal gyneas just don't have a clue. what hrt are you on and has it kept endo at bay? x

[Marcia71 in reply to Thecurse]

I'm on Kliovance. Only been on for 2 months as was on evorel and told not right for endo sufferers as oestrogen only - need combined so evorel Conti patches or kliovance is a tablet as I prefer that. Endo had clearly caused me problems before I restarted hrt but this one is prescribed by endo and menopause specialists so I'm hopeful it's ok. Pain certainly hasn't got worse since I started this one whereas on evorel it did. I did try no hrt for a while but hot flushes and night sweats and insomnia were awful and kliovance has stopped all that.

[Thecurse in reply to Marcia71]

Oh wow that's great to know.....I really can't do anything with my endo pain and yet I was put on this tibalone as it's a synthetic hormone of both kinds but its no way as bad as evrol but I still can't leave my house to go far and cannot get comfortable!! are you in the UK? it's great to know that maybe this could do me good rather than further surgery. thank you. does this hormone make you feel good and give you energy? I'm so tired it's awful my life has just gone it's so upsetting x

[Marcia71 in reply to Thecurse]

I am in the uk and my pain is just awful. Thankfully Tramadol has allowed me to do somethings and get out of the house but still v restricted and sitting up is just the worst.

I found some energy restored with hrt but as pain affects my sleep I'm not anywhere near as energetic as I was and don't do much any more but lay on sofa and watch tv. As soon as I do one thing a day - say meet a friend for coffee - that's me done in. Other pain meds didn't help - amitriptyline and pregabalin made me v v tired. Lofeparamine (anti depressant) certainly helps too.

Good luck - we all need some of that!!

[Thecurse in reply to stacynicole]

Sorry only just seen this. of course I can tell you.

I had mine done by keyhole, however they did struggle with everything being stuck to my pelvic wall etc.

I must say I did have a hard time with recovery but I was back in hospital 2 weeks prior due to agony as colon was completely compacted! so I had that pain Aswell as hysterectomy pain. I would Def recommend key hole. you really must rest after and not lift a thing. please take some form of bowel softener due to pain killers. naproxen was a life saver for me. I was back at work after 4/5 weeks. I also had a blood blister on cuff of vagina stitches which slowed my healing down. (I don't get any bloody luck!).

They left an ovary to stop early menapause....I'm niw learning that doesn't work. 1.5 years later I feel pretty pants with perimenapause. evrol patches worked a treat on that but put me in hospital as it fed endo! changed to tibalone but still in a lot of pain. however the last couple of days have been easier so I'm not sure how long that will last.

If there is anything else you want to know just ask. good luck with yours, everyone else I know had an easier time than me, even returning to work 2 weeks later!! depends if your insides are as bad as mine were xx

[Thecurse in reply to Marcia71]

OK, thankbyou. I have joined it now and how good it is to know we are not alone! x