HRT or natural alternatives after total hysterectomy for endo

Hi everyone

I'm still waiting for a date for my total hysterectomy, and just doing more research into the options for HRT afterwards. I know it's a very individual thing and different options will suit different people, but has anyone had any experience or got any advice on types of HRT or natural alternatives that have helped relieve the menopausal symptom whilst not necessarily triggering a resurgence of their endo? Also, is there such a thing as menopause or hormone specialists who can help work out exactly the right sort of HRT depending on your individual condition and situation? A friend of mine mentioned this but I can't find anything really online.

Thanks everyone, and have as good a day as possible. X

[Adrianna]

I've just started thinking about this too. 4 yrs post total hysterectomy & back to square one. Due to go in 1st September after bulling the consultant to even consider operating!! I have a frozen bit of bowel & symptoms of endo as I had before hysterectomy. Consultant thinks it's adhesions , but we know our own bodies better than they do.

He just handed me estradot hrt patches 4 days after hysterectomy, no discussing my options , at that point I wasn't strong enough to question his decision.

From what I can gather my patches contain eostrogen which combined with all the scar tissue equals endo heaven to grow.

I don't want to have this surgery & then continue to feed the endo & end up back at this point again.

Hope yr pain isn't too bad today xx

[Hidden in reply to Adrianna]

Hope you get more info this time to make a better informed decision. It does seem to be a minefield. Tibolone seems to be mentioned quite a bit as one more tolerable option, and one of my other kind responses has confirmed there is such a thing as menopause clinics (but not sure how easy it is to be referred to these). Good luck with your next appointment and hope you find out what's happening and what your options are. Take care x

[dabba76 in reply to Hidden]

Hi, my local family planning (now called sexual health clinic) run a menopause clinic may be an idea to contact them or your GP to see if you can attend. My experience is that the FP clinic have been much more sympathetic and have more time to go through your options x

[Hidden in reply to dabba76]

Ooh thanks dabba76, I wouldn't have thought of that. I think the one reassuring thing I'm getting from responses so far is that, whilst it would be great to get the right HRT from the start, it does seem you can try different options till you find something that seems to suit you. Good to know I might be able to find some local options for follow up advice after surgery, so might not necessarily need to go back to my consultant. (He's great and I trust him, but I now live about 200 miles away from that hospital so not easy to just pop in and see him for a chat!!). Many thanks x

[dabba76 in reply to Hidden]

No worries! On further investigations at my local clinic you can self refer. Best of luck x

[Hidden in reply to Hidden]

Perhaps ask this consultant to transfer your notes and recommend a colleague of his field near you? They do speak to each other.. I have 2 rheumatologists looking after me via network link..

[Marcia71]

Hi there

I had hyster and ovaries removed in Feb 2015 and put on Tibolone which is synthetic hormones but did nothing for me.

I got referred to Menopause Clinic -yes they do exist, but not many - at Guys hospital. And run by same people as BSGE clinic so maybe ask your local one? They gave me a combined HRT which is both oestregen and progesterone and it seemed to work ok

I then made mistake of listening to another gynae who told me I should be on oestregen only HRT so I switched and endo grew back more!

So currently I'm on no HRT but suffering with hot flushes and insomnia and really low mood. I'm trying anti depressants for mood and Menopace (herbal supp from Boots or Holland &Barrett) and they don't really seem to be working so think I'll try another HRT and will ask BSGE clinic when I see them.

Good luck and keep researching! I thought I had but it's all v confusing as each element of what I've had done and suffer from suggest a diff HRT

[Saz13 in reply to Marcia71]

I had my hysterectomy 11 year ago and two years ago my final right ovary out - went on patches and I grew an ovarian remnant and cysts - very painful , now am on gonapeptyl injections just had 6th one and they're saying if I have more injections I must go back on tibilone but scared to death and don't really want more surgery as I have loads of adhesions and they keep coming back worse - it's truly miserable for us all x

[Hidden in reply to Saz13]

I'm so sorry saz13 to hear about your ongoing problems. I'm hoping the total hysterectomy will bring me some relief but am well aware it might not offer me all the answers I'm hoping for. But I live in hope! I really hope you find some peace and comfort after all you've gone through. take care x

[Saz13 in reply to Hidden]

Thanks Hidden , for years I was fine after my hysterectomy and it was only after having surgery to have ovary out and the mass and adhesions I had issues - so the hysterectomy is prob the way forward for you, how old are you? Are you at an age where you can perhaps not have HRT? Or only 40 like me? Xx

[Hidden in reply to Saz13]

Hi saz13. I'll be 41 this year. Tried several attempts at IVF with my partner with no luck so we've decided enough is enough and time for me to try to take control of my symptoms for the longer term. Big step but it feels like the right decision for me now. Best of a bad bunch of options! I'm sorry about your current problems, but it is reassuring to know you had some good years after the hysterectomy initially. Mine will be total, including both ovaries and everything. But also have a complication with my kidneys so just waiting to see what they want to do about that aswell. All good fun isn't it?! X

[Saz13 in reply to Hidden]

Same as me I'm 41 this Saturday!! and I didn't have kids neither ! I think you do the right thing, after I had my ovary out I was on patches and felt great for few months - then pain started again and it was this remnant ! I also have a lump right lower side they said was hernia now don't know ! Seeing bowel man next week then Gynae week after ! Never ending ! I hope you get some answers soon then as to what they're gonna do ! Xx

[Hidden in reply to Saz13]

And happy birthday on Saturday saz13! Hope you feel well and have a great weekend! X

[Saz13 in reply to Hidden]

Thanks Hidden ! Another year older lol xx

[Hidden in reply to Marcia71]

Thanks for the reply. I know, there never seems to be any easy answers or options with this condition! Iv heard about tibolone quite a bit. I think iv had that before during at least one round of zolodex I was on some years ago. My consultant suggests if I reacted well to the zokadex and tibolone then it's likely Ill react the same after the operation. But have not confirmed plans yet. Good luck with your ongoing search for the right combination, no doubt I'll be joining you in that search soon! Take care x

[Hidden in reply to Marcia71]

Ouch that's a careless gynae not seeing your history especially if it was one reason you had hyster. in the first place !! I had a natural HRT-you might not like the idea but I,ll tell you:-- Its Premarin and its made from the urine extract of pregnant mares! Told you it sound yak but its very effective, its on the expensive listings of HRT and hopefully you will have a Trust with a good budget who will let you try it.

[Hidden]

if you are worried about post op. speak to the surgeon prior to surgery, take a list of all the things you have mentioned. Its hard to advise when I don,t know your history, you will probably be ok for a few years before you need to go further. Endo is active during fertile years and so shouldn,t bother you once you have BOTh ovaries removed.You need to ask surgeon if they are taking both ovaries out=some won,t

[Marcia71 in reply to Hidden]

Sorry to say removing both ovaries doesn't necessarily stop endo. They need to take out everything that is already there and then, if needed, you need to be on a combined HRT to have best chance of endo not regrowing or continuing to grow.

Best of luck

[dsanchez]

Hi all:

After more than 20 years with Endo, the only thing that has helped me tremendously is 500 mg or more of a 10% progesterone cream, low carb diet and simple yoga excersices. I have to lay for the cream because no insurance would pay for it and found relief on my own since doctors only recommended surgery and synthetic hormones. I refused to have the hysterectomy. It has taken me years of searching, going to doctors who did not help me nor listen to me, I am not cured, that I know...but before the cream and diet I had symptoms like rectal bleeding, severe pain that would make me stay bedridden for a week or more and so on...I hope everyone finds relieve no matter how...blessings...

[girli1111]

I had both ovaries removed, (not hysterectomy), but immediate surgical menopause. The superb endo specialist surgeon referred me Immediately to a menopause clinic at the same hospital, partly because I had history of DVT, so was potentially at risk from some HRTs. 3 years on I am still taking Utrogestan and Sandrena gel HRT. I have no endo symptoms, and all is well. (I have/had stage 4 deep infiltrating endometriosis), and was warned that some might have been left on/in my bowel and could require further surgery, but fingers crossed, all is wel)

[Rayburn in reply to girli1111]

What dose utrogesten do you take also same with hrt what dose. I was advised years ago to take crinkle gel twice per week but need hrt as now have osteoporosis.

[girli1111 in reply to Rayburn]

The Sandrena is 1mg and the utrogestan is 100mg, both are HRT. I was told I could taper down the sandrena gel if I wanted, but not the stop taking the utrogestan unless I was to come right off the sandrena

[Rayburn in reply to girli1111]

That should read Crinone gel I pad altered