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[Buttermerelady]

Hi, Thank you for allowing me to join I really could do with a little advice on which way to go please? A bit of background info.... I'm almost 47 and started this whole crazy journey at age 41 with peri symptoms which I didn't have a clue about! I was diagnosed with severe endometriosis prior to this and had several surgeries to clear it so what I would say was the worst ten years of my life in terms of severe pain I could not wait until menopause kicked in as I was told that often is the cure. So sure enough as soon as peri kicked in I got major relief from pain, hallelujah...... the suddenly my body was taken over by this crazy woman, horrendous night sweats, anxiety, brain fog etc. I was referred to a menopause specialist and as I had gone a year without a period I was prescribed Everol 25 with daily Utrogesten 100mg, symptoms didn't improve and was moved to Everol 50 and then to 75. Started to feel a lot better in myself but still had mood problems and crazy unhinged moments were still there but all other symptoms disappeared by this time I had been on HRT for 16 months. I Started to have breakthrough bleeding and had to have a hysteroscopy as doctor suspected womb cancer, thankfully all clear however my womb lining was 9cm. By this time endo pain returned as I was warned this could happen as the hormones are feeding the endo but it was bearable. Specialist not happy about that and the breakthrough bleeding, wanted me to have the mirena  but I asked for time to think about it as I have several friends who gave me scare stories so kind of put me off. She then said I could take Provera tablet instead of the Utrogesten but wanted me to come of the HRT completely for 2 weeks before starting it again afresh with the provera tablet. Now the thing is I was dreading coming off even for just 2 weeks however I felt so good being off it after 2 weeks that I haven't started the patches again nor the provera but felt so good that I thought I was through the other side..... I think I was wrong, the night sweats have started again and the joint pain is bad and also vaginal atrophy is not good and my mood is still low but not as crazy if that makes sense. I just don't know whether to start the HRT again or stay off it, I'm worried the specialist won't be too happy that I havent re started it like she told me to and I have a follow up the end of this month, I also have ostepena so I know the HRT is good for my bones. I think what I am trying to ask in all this rambling is it possible that I'm through the worst or are the symptoms likely to come back even more so after almost 5 weeks clear of HRT or should I just bite the bullet and go back on it? Also would like to add that interestingly I haven't had a single endo related pain or bled since stopping the HRT. Thanks so much for reading and apologies for rambling on, any advice greatly appreciated x

[Souris]

Hi, Buttermerelady!

I'm new here myself, so I'm afraid I don't have any advice to offer. I just wanted to send some good vibes. I'm sorry you've been through all that!

From what I gather, the hormones can certainly shift around, so they might be fine for a bit, then go crazy again. And, of course, everybody is different! I hope somebody who knows a lot more than I do will chime in. People seem so nice here.

[Buttermerelady]

Hi Souris

Thank you for the kind welcome and the good vibes sent.

This forum is wonderful and very helpful I've been reading lots of information and its good to know that we are not alone in this journey.
I'm hoping someone may have some advice to offer relating to the HRT and endometriosis.

Thanks for saying hello

[CLKD]

Morning!

Maybe ask to see the Consultant about the endometriosis?  Or directly to a menopause Clinic for advice, search for 1 in your area and contact them to see what the referral protocol might be?

The body doesn't get where it is suddenly (usually) so being 2-3 weeks without HRT then getting symptoms means that any hormone remaining after initial HRT was still there and has left the body.

Browse round.  Make notes.   Some find it useful to keep a mood/food/symptom diary.  If you type endometriosis into the search box there may be threads that pop up?

[Buttermerelady]

Morning CLKD

Thank you for the reply, I haven't seen my consultant about the endometriosis for years now ever since perimenopause kicked in as the symptoms totally vanished. It's the HRT that seems to be feeding the endo to erupt again, I have been under a specialist at a menopause clinic near me however although she is highly respected I feel like she is not listening to how I feel and can be quite abrupt and on occasions has been rude to me and I have left feeling uncomfortable. I actually feel better mentally off the HRT than I did before however I'm concerned that things are going to get worse again hence my questions and so do not know whats the best course of action to take. I have only been offered one type of Patch but different strengths and she tells me there are no alternatives and basically told me that the mirena is my only option even though she gave me provera!

I have a doctors appointment tomorrow and will ask if there's an option to see someone else.
I will also have a browse around on the forum to see if any threads pop up, thanks

[CLKD]

There is no need for anyone to be abrupt, particularly during The Change - maybe she's suffering 

Let us know how you get on?

[Buttermerelady]

To be perfectly honest if it were just the once I would've probably thought she was having a bad day or I was being overly sensitive however each time I go I just get the feeling that she is sick of me, I think she didn't like the fact I wanted to have time to think about the Mirena which is when she was abrupt. But yes she could of course be going through it herself you never know.
Will update once I have seen her 

[nicky_boo]

Hi Buttermerelady,

I am fairly new here myself. I have been on HRT for 14 months but I think my story may help you so here we go:

I have endometriosis too. Had surgery 12 years ago but I wasn't happy with the resuts. This is another story... Having a babny 7 years ago helped though. I am 47.

I initilally started HRT with patches and we increased the dosage as some symptoms weren't cured. As the oestrogen dosage increased, my endo pain was back with a vengance and I also started to get intermittent abdominal pain which kept me even more awake at night. I was referred to a gynae (privately) who discovered a big cyst and wanted to operate on me but I wanted a second opinion and asked for a private referral to an endo specialist surgeon. He was brilliant. He decided to change the dosage and delivery method of HRT and observe me for 2 months.
We also discussed Mirena as it is always advocated by doctors in endometriosis cases but I declined due to my sensitivity to progesteron and horror stories online.
Anyway, we moved from patches to oestrogel gel for the oestrogen part of my HRT. I was taking ultragestan vaginally and we kept it the same. The doctor told me to adjust the number of pumps depending on how I feel.
I starated to feel better and within 2-3 months the cysyt and the endo pain was gone!

HRT can work with endo you may need to try different options.

FYI, I bit the bullet and got the Mirena fitted 5 weeks ago! Still early days to comment. I will post a question about it soon. So far so good and it is a same not many people report their success stories with it.

Hope my story helps you. Best of luck!

[Buttermerelady]

Hi nicky_boo

Thanks so much for sharing your story regarding endometriosis sounds similar to mine in terms of age, I too have an ovarian cyst at the moment which causes some discomfort however its only around 4cms so they're not worried about it. Good to hear you were able to have a baby though as fertility is often affected with endo.
I kind of feel like patches seem to be the go to for doctors to give out, I have never been offered gel nor have I been offered to take Ultragestan vaginally either so I am very interested to hear that your pain and cyst has disappeared using that combination thats fantastic!

Do you mind me asking why you decided to have the Mirena please? Does that mean you no longer use the Ultragestan?

I saw my gp on Thursday and she is an advocate for the Mirena and gave me a lot of information so I felt a little happier after speaking to her however she said she would be happy for me not to return to the HRT if I felt I could manage without it as at almost 47 and her opinion I am at an age now where natural menopause would be starting so not sure which way to go at the moment.

Please do keep me updated on the Mirena if you wouldn't mind I would really love to know how you get on with it, its good to hear that you are feeling good though and long may it continue for you.

Thanks again x

[nicky_boo]

Hi Buttermerelady,

I started to use ultrogestan vaginally following the advice in this group. Swallowing the pills gave me a lot of stomach trouble. I didn't have any side effects while taking it vaginally. My GP was surprised when she heard what I was doing as this is not the recommended method but the specialist gynae knew about it and said it was fine.

In terms of why I decided to go for Mirena... Because for many years, doctors have been recommending it. Many horror stories online but many people who really get on well with it too. They don't post much on forums though.

I decided that I will never know how I will get on with it without trying it myself. I am still in the adaptation phase. I need to give it at least 3 months really. In the mean time, I am not covered with acne, did not lose my hair and did not try to kill anyone or I am not in depression at the moment. Hope this does not change. Worried about gaining weight. I am on a diet to prevent this so far so good. Some cravings are gone interestingly. My only trouble is the slight bloating in my tummy - despite my weight loss. (I lost 3 kilos since Mirena was put in 5.5 weeks ago - through dieting). I have been spotting the whole time but this is gradually diminishing. Every now and then some cramping but nothing like the period pain.

I am considering changing or increasing the oestrogen delivery method/levels though. I may move to a patch or patch+oestrogel. I will discuss this with the GP this during the mirena check up in a couple of weeks.

Hope this helps. Feel free to ask further questions.

nicky_boo x

[Buttermerelady]

Hi nicky_boo


Sounds like you are doing well with the Mirena and from what I have read spotting is very normal in the first few months until it settles, you're right though that most of what you read online are horror stories and its good to hear the positives from you.

I am still totally HRT free at the moment and not feeling too bad, the worst symptom for me is joint pain which is affecting me exercising but I am taking some supplements to try and combat this so we shall see. I think if symptoms begin to get worse I need to re look at possibly having the Mirena as like you this has been recommended to me for years.

Not everyone gains weight with having the Mirena my sister in law actually lost weight after she had hers and was not trying to lose weight so you may not gain any extra, she eventually had to have hers removed because she had heavy bleeding constantly for 6 months. Hopefully the bloating will subside and it maybe just a phase and this too may settle especially with your dieting which sounds like is going very well.

Thanks for sharing how it's all going and I hope it continues in a positive way for you.

Buttermerelady x

[nicky_boo]

Hi again Buttermerelady,

Thanks for your encouraging words. Pleased to hear that you are doing well at the moment. I hope joint pain eases off. I had lower back pain on Mirena for a few weeks but it is gone now. It is so interesting how hormones affect everything. I am truly astonished since I started this perimenopause roller coaster ride. Hormones change your way of thinking, your personality, your confidence and interactions, they change you! And nobody ever really prepares you for this. It was a shock for me (accompanied with denial).

Take care x