Hrt advice needed

[0702claire]

I am hoping someone will be able to help. After a hysterectomy 14 months ago I find myself nearly back in the position I was before the operation. I was put on Elleste solo 1mg as I'm only 41 and had a full abdominal hysterectomy. Anyway I have been back at the doctors as the extreme fatigue, abdominal and back pain had returned. I was offered an increase in the dose of oestrogen (2mg) or anti spams tablets for my bowels as the gynecologist said it's highly unlikely that it's endo. This makes me so angry as this is what they told for 8 years before I was diagnosed. I finally gave in an took the increase in oestrogen against my better judgement. So I'm not even 2 weeks in to the increase of dose and the headaches and pain/inflammation in the basement of my neck is back and I really can't handle this constant pain. So I am wondering if anyone else has this pain, could it be the oestrogen or that the oestrogen is very quickly making my endometriosis worse? Should I give it more time for my body to adjust or should I have trusted my instinct and said no the the increase? Sorry for the extra long post but really need advice. Thank you Claire x

[Marcia71]

Sorry to hear your suffering and not being listened to. I know that all too well! I had TAH and BSO in Feb 2015 and tried a few hrts on gynae and GPS advice. Finally I got myself referred to bsge clinic and person in charge is also in charge of menopause clinic so knows hrt. As an endo sufferer you need a combined hrt - I'm on Kliovance and if that's not enough kliofem.

Unopposed oestregen will just make endo carry on growing. Either it wasn't all taken out when you had a hyster or it was not seen as so new and now it's being fed it's growing.

It's a really hard (and long) battle to get anyone to listen to you about endo after a hyster as it is unusual but not unheard of. Especially if endo not excised at time

Get gp to referyou to bsge clinic and change to a combined hrt. Good luck. After two years I'm finally on list for excision surgery at bsge clinic but it's been a battle.

[0702claire in reply to Marcia71]

Thank you so much for replying. I knew myself that it was the wrong thing to do but felt like it was the only thing I was being offered. What is a bsge clinic? My endometriosis wasn't removed as the gynecologist told me after that it would die because I didn't have ovaries, it really is laughable that we know more than professionals. I'll get myself back to the doctor as soon as I can get an appointment. Really appreciate your help. Hope you get relief after your surgery x

[Marcia71 in reply to 0702claire]

bsge.org.uk/centre/

This will give you list of all bsge clinics - they are specialist endo centres and have full range of services to help endo sufferers. Especially those who have had treatment elsewhere that has been ineffective. I'm at Guys.

I too was told by gynae that did my hyster it would die off! As you say it's laughable we know more than the supposed experts. Be prepared though that even some I've met at the bsge clinics say it can't grow after a hyster or certainly once you're ovaries are out and we know it can. There are a lot of ladies still suffering.

I have my surgery on 28 and this time they will excise all remaining endo so hoping for relief at last.

Good luck

[0702claire in reply to Marcia71]

Thank you, Edinburgh is the closest for me but I need to be referred by a member of the gynecology health board. Hate to think what fight I will have to make that happen! Have the doctor today again so see what happens. Really appreciate your help x

[laurastone_6]

Hi my lovely so sorry to hear pain after Hyst, I'm guessing you had ovaries removed which is why you are on oestrogen, I had abdominal hyst with conservation of ovaries at age 30 due to terrible endo, I begged them to take ovaries , however they removed them 2 years later and had new lease of life.

Another 2 years later doc told me over and over again that I needed hrt as I'm so young to have no ovaries, this concerned me as my understanding is oestrogen feeds endo or any endo left dormant after hyst, worse mistake of my life and ended up back in theatre. Am now taking calcium and citalipram for the hot flashes and night sweats and certainly no oestrogen supplements, got my life back again. Hope this helps xxx

[0702claire in reply to laurastone_6]

Thank you so much for getting in touch. I will have a look at what you are taking to see if it's an option. I knew myself increasing the oestrogen was wrong but feel backed in to a corner at the moment. Take care x