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[Ermin2trude]

I had a Mirena fitted 8 weeks ago. The side effects were awful (migraines, depression, brain fog, zombie like, plus bloating, greasy hair, digestive issues etc). After a week the Mirena went rogue taking the strings with it and creating a myriad of other problems (intense cramping, heavy incessant bleeding, PID )and I was left in an abyss trying to get the Mirena removed. The waiting list for a complex coil removal on the NHS was somewhere between 33 weeks and 70 weeks depending on whether my GP had inserted the word ‘urgent’ or ‘expedited’ on the urgent referral form. My GP used both which has proved to be too confusing for the hospital.

Yesterday I had the coil removed privately. The waiting time for this was 4 days so it was a no brainer. It cost £140 and the relief is overwhelming. However, to add value to the cost, the doctor had a long chat with me about hormone sensitivity and referred me to a very long and detailed HRT study, trial and report which took place in France, covering the EU.

So just pre HRT I had a scan and everything was in good shape. 2 years down the line, I have large fibroids, a bulky uterus, ovarian cysts. Pre HRT I didn’t even have a sniff of hayfever, now I have histamine issues which can be intolerable. It seems that oestrogen is not my friend, and judging by my experience of the Mirena (and provera, utrogestan etc) progesterone isn’t either.

So back to the French study, one paragraph in particular struck a chord with me

Women reporting moderate alcohol use were less likely to stop their treatment than women reporting no alcohol use. The women who drink not at all or only rarely may have health problems; they may also be more sensitive to HT side effects and, therefore, may stop more easily. This result points in the direction of the “healthy user effect” (i.e., women who continue treatment are in particularly good health) (36). Light or moderate drinking (we found that “heavy” drinkers accounted for very few of the regular drinkers) may be a sign of good health, while drinking not at all or very little may reflect poor underlying health. We have found no other study that analyzes this factor.

I don’t drink because even a small glass of wine produces an awful migraine. As this doctor chatted to me and asked about alcohol etc and hormone sensitivity, concluding that I shouldn’t have been prescribed HRT, I wondered why my GP and menopause specialist had never spoken to me about any of this. They’ve had plenty of opportunities.

So I can’t continue with HRT, but will stopping reverse the negative effects it’s already had? I don’t know. I feel left out in the cold again and having to do my own research.

Or should I see this as every cloud……… I was given a golden opportunity to speak to a gynaecologist who really understands hormones and maybe being set on the right path whatever that path might be.

Any advice from anyone welcome. I’m struggling.

[AngelaH]

It seems that oestrogen is not my friend, and judging by my experience of the Mirena (and provera, utrogestan etc) progesterone

Oestrogen is not my friend as well, very little dose of it makes feel me ill, but Mirena and me are big friends  , we are now together for 4 years and to be honest Mirena saved my life and gave me a chance at the age of 48 to go back to my 30s and enjoy life in general  ultrogestan is not my friend, I hate it, my body doesn’t tolerate it at all. I never understand what “sensitive to oestrogen/progesterone” means.

[Nas]

Just read your post with interest Ermin and I am unsure what to do also.

I know pre HRT, I was also in good shape. But now I also have a 'bulky' uterus with a 6cm fibroid, which is growing outside the uterus wall and probably pressing on a nerve somewhere.
I attribute these issues to the HRT ( I think).

I think you have to do what is right for you and your body at this moment in time.
Do the benefits outweigh the risks for you ? Do you essentially feel better on oestrogen?

I know, pre HRT, I was barely able to drive. I would get severe anxiety, prior to getting in to my car. I would clutch the steering wheel in sheer panic and would sweat for the entire duration of the journey. This was and is not sustainable, due to where I live (semi rural) so I knew I needed assistance. That said, I am not happy with the fibroid and uterus issues at all. I am worried what size this fibroid will grow into and having seen some of the photos of the Fibroid UK FB page, it scares the pants off me!

You have to go on how you feel. Can you function without hormones?

So glad that coil is out. What an utter nightmare for you.

[SarahT]

 I agree that although I have symptoms and possible side affects from using hrt I am far better than I was prior to coming into hrt.

I would be huddled on the floor crying, unable to think let alone function. I had several of these episodes and it has taken a year to get where I am, not a total cure, but a better understanding of  my body  reactions to hrt and the continuing fluctuations of my own cycle.
It's weighing the options of how you are at any stage.

Maybe if symptoms are not too severe right now, they may be better controlled off hrt? I have had fibroids for many years. And I have the Mirena coil. I have not drunk alcohol for many years. Maybe it very much depends on an individuals tolerance to any form of medication?

Time will tell what may happen,but for now I think I am where I can hope for the best regime for my body right now. a work in progress is now I look at it.

I wish everyone well.