I had a total hysterectomy with bilateral salpingo-oophorectomy in January following endometriosis diagnosis. The surgeon thinks I had endometriosis for at least ten years due to the amount of tissue that was actually there so was fortunate in a way to only have awful symptoms in the few months prior to diagnosis. Being plunged into surgical menopause at 41 is the pay off and I'm just hoping to hear how other people in a similar situation manage. I've taken Tibolone since January which initially seemed ok but since October I feel like my symptoms are worse. My sleep is impacted because of night sweats, hot flushes are frequent throughout the day, excema has developed on skin around my eyes, my scalp is flaky, zero libido etc. etc. The list is probably more but that seems enough.
My GP has referred me to the specialist menopause clinic but the average wait there is 22 weeks which takes me to May. I feel like my life is taken over with menopause and although I'm grateful to have been able to have surgery and no longer have endometriosis pain, I've just had enough of not feeling well. If anyone has any tips or knows of a good private clinic in the South Manchester area I would be grateful.
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Duke26
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Hi Duke26, Merry Christmas! I live near Manchester too! It sounds like you may need estrogen if you're able to tolerate it as tibolone is often not strong enough once you've had everything removed so maybe worth speaking to your GP or endo nurse if you have one. There are other meds specifically for hot flushes but red clover/sage from Holland &Barrett is supposed to help if you want a more natural solution xx
Thank you for the Holland and Barrett tip. I'm being told that I can't have estrogen at the moment because there's a risk the endometriosis tissue could regrow.
Hi Duke26, Merry Christmas! Sorry to hear that you're having issues. I had a full hysterectomy on the 16th of this month. My consultant has put me on HRT and said I would need to continue until I'm around 50 years old. I had a bad experience with tibolone and gave tried different versions of HRT while I was on prostab injections. I'm now trying a gel and tablet combined HRT, ostrogel and utrogestan. I have tried these before and the side effects are manageable. But since my hysterectomy my menopause symptoms have reduced a little.
I would suggest getting in touch with the Endo specialist nurse.
like Quanngoth, I’m on oestrogel and utrogestan progesterone tablets. It took a while to get the level right for me. Initially, my gp prescribed just a oestrogen patch 50mg - which was far too much for me - gave me palpitations.
After ‘ fighting’ for progrstrone to take with the oestrogen, I started on 3 pumps of gel- again too much for me - gave me chest pains so I reduced down to 2 pumps and am no longer displaying/felling any meno symptoms (yay)! The trade off for me is that I have needed to take blood pressure tablets - not 100% certain they are linked but they could be.
I am a fan of the gel & tablet combination as it is easy to adjust to your own body’s needs. In the new year, I’m planning on exploring 1 pump but will take things slowly…
I’m 50 and have been told I should take the combo for two years for general health and meno control.
Wishing you a great day and an even better new year!
Thank you. It's so frustrating that it's a fight to get what you need. My GP so far seems to have no knowledge that can actually help me so I'm just stuck waiting for a specialist. Although I might give in and pay for a private consultation!
hi Duke26, I don’t know how you’re fixed financially but if you can afford it, I’d definitely recommend Newsons Clinic, they can do everything via online consultations except bloods (they like to do bloods annually if you have T) but you don’t need to go to their clinic for that, there are ways. They got me sorted out pretty swiftly, I take 200estradot and testosterone, usually with endo they recommend progesterone also, but I don’t do well with it, they are very well qualified with surgical menopause whereas you might struggle with a regular specialist and there’s such a long waiting list. I’m 57 and been in SM for 3 years now and will be taking HRT for the rest of my life. This ending when you hit natural menopause age does not exist with SM as literally nothing is running around our bodies. I hope you get sorted so you can feel more human. Merry Christmas
I have had a full hysterectomy with bladder scraped off scar tissue and bowel. Removal of scar tissue etc quite dense with fibrous etc. I am now 12 weeks and still very swollen how did you get on? Thank you. 😊
I hope you are ok Poppy. I had similar surgery to you in September. Complications in October but am starting to get back to normal now. Swelling going down. But still need to be aware of my movements - hills are a pain! I should be able yo return to tennis at the start of Jan but feel I need to push it back further 😳.
Excited for the NY! 2024 had not been my favourite- onwards and upwards 🎉
Hi Duke 26 ,I feel your pain. I took had the same operation as you in July. I'm still off work hoping to return January. I had endometriosis everywhere. Grateful it's gone. I started Estrogel one pump then up to two which gave me bad indigestion. I am in one pump now and can honestly say it's helped so much . I can sleep ,less flushing and no more lizard skin.
I think once you get Estrogel you will see a dramatic difference. I did . Albeit I had to wait a few months to go in it .
My own Dr has mentioned I may need progesterone as a preventative measure for endometriosis . However my surgeon did not recommend that as no womb etc..and he was confident it was all gone.
What a journey ..I hope you get sorted . Sending healing . 🙏
Thank you. My surgeon recommended Tibolone for two years as a preventative measure before estrogen only but I just don't feel right so hoping there might be something else I can try. I'm so grateful to have all the endometriosis gone as it was everywhere too and impacting my bowel. It does seem like quite a journey to get what you actually need post surgery.
It seems so unfair at times. I'm so grateful to not be in pain anymore and making trips to A&E but it does seem a lonely place post op where you're left to get on with it. My GP surgery seems utterly useless at the moment but I'm hoping that at my annual review of Tibolone I can actually get somewhere. It does feel like my GP practice has no one who can help so I just have to wait for my appointment at the specialist clinic. Talking on here is helpful though to at least find others that are experiencing similar.
Your so right ,taking on here really helps . It's great to read others experiences and stories and get help. It's terrible that GPS ,advanced practitioners don't really know much.
I'm in Scotland and there doesn't seem to be any endometriosis specialists in my area .
I hope your annual review goes well. You feel like your fighting for your health at times . I have a review in a few weeks to get more estrogel. I still can't get rid of the post op nerve pain and bloating. I'm five months post op does that ever go away ?
Sorry you're still experiencing post op pain. I had robotic laparoscopic surgery and was really fortunate to not experience pain too badly following the op. It took a while internally to feel stronger but as long as I was careful I was fine. Lifting is probably the last thing left me know. I held my nephew, who is 3, a month or so back and had to pass him quickly on as I could feel pulling inside. Hopefully your review goes well too.
Thanks Duke 26. I have been watching and not lifting heavy things. I have been doing the physio / pelvic floor too. I think your right though the pulling inside never goes. My physio did say no more lifting furniture ever again :(. I guess it's only five months on ..I'm so impatient used to be hyper and fit :). Keep in touch I shall let you know how my review goes.
I'm sorry to hear you are suffering with the meno symptoms. Very similar story to you. I'm 45 and had a 6 hour op in September including full hysterectomy, 2 bowel resection and appendix removal.
I was very very blessed to have an incredible surgical team of 6 but the main gynecologist was incredible and is a record holder of performing so many hysterectomys in a day using the Da Vinci machine. He is very pragmatic and incredibly knowledgeable. He put me on 100mg evirol and 100mg utrogestan nightly along with 1/4 testerone daily. I went on this immediately after surgery and will be on it for 2 years min. He said it is imperative I have the utrogestan to help keep endo at bay. I feel like a new woman and yes still have meno symptoms (anxiety is for real and where does that even come from!) But the hrt regime he gave me is insane. I would say seek out and pay private if you are able to. Wishing you all the best x
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I shall let you know how my review goes. 
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