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[Emo10]

Hi,

I'm after the wise words and experiences of this wonderful group.

Context:
42 years old
Right ovary removal 2015
Night sweats and symptoms of peri 2018
Mirena and HRT (oestrogel)April 2022.

I've had a difficult time with HRT. While it has helped with many aspects of peri after a while it becomes too much for my body (massive spikes as evidenced by my bloods). I was originally on 2 pumps but in August I dropped to 1 pump. Recently my symptoms have ramped up again but fortunately I had a private appointment with a specialist (different to my previous private appointment).

I went to my appointment yesterday and the specialist has suggested I stop HRT altogether and use a low level AD instead. She wants me to reset my body and do new bloods then. She is concerned I'm not peri because of my bloods but I've had so many tests and everything always comes back clear. I'm pretty confident this is peri.

I'm very reluctant to use the AD but will definitely give my body a break from HRT. She checked the mirena was still in place while I was there because I'm still bleeding a lot (16 days of bleeding in November). Whilst checking she found a cyst with 3 separate follicles attached to my remaining ovary. It is 5cm in size.

My questions are: has a low level AD worked for anyone and what advice would you give for me moving forward? I feel pretty hopeless at the moment because I'm back to square one.

Thanks for reading!

[Flossieteacake]

I feel you know your body best and if you think this is all peri related then I bet it is. I have also heard that often blood tests are not accurate at diagnosing peri. If you wanted to try an AD then there is no harm and it may even boost your mood. I find them very helpful and would not be without them. As for stopping HRT you are in such a difficult situation if it is causing you such bad side effects. Have you ever tried a low dose oestrogen patch? They start at 25 but I was wondering how it would go if you cut that in half so you would be on 12.5.

[Emo10]

Thank you Flossie. I appreciate your support.

I'm going back to the nurse at my practice next week to talk things through. Hopefully she'll reassure me around the ADs.

I think a patch might be better from a slow release perspective for me but I am now worried the nurse will advise me to stop HRT because what the specialist has said.

[Petra]

My GP was always at me to stop HRT...grrrr. At one point maybe 5 years ago, I forget now, she persuaded me to try anti-depressants instead, but it did nothing for me. I eventually stopped and went back on HRT, low dose (25 mdg estradot patches).

Good luck with finding something that works. I guess it's good to trial coming off HRT every now and then. My tedious story of such a trial I won't reprise here...suffice to say, headed back to GP to get a new HRT script next week. Sigh! I am 60. At this point, I feel like this sh*t will never end. (She says, testily, after another night of drenching sweat and v. little sleep, whine whine)

[CLKD]

Which type of specialist?  ADs are not the first line of treatment for women in peri menopause. 

HRT is recommended if symptoms require it.  It mayB that the regime you were on was interfering with your hormone bursts from the remaining ovary, even if they are removed if the stem is left there may be a small amount of oestrogen floating about.

Some find that keeping a mood/food/symptom diary of use to chart progress.  Which symptom would you like to ease first?  How long would you be expected to stop any HRT, also blood tests are reliably unreliable.

Let us know how you get on.

[Emo10]

Oh, Petra I'm sorry you are still suffering.

Last time I took a break my debilitating symptoms returned within weeks. I'm day 2 without gel today so we will see how I mange.

[Emo10]

CLKD it was a menopause and gynaecology specialist that I saw.

I think the idea of the oestrogen interfering could be spot on. For some of my very short cycle the gel worked wonderfully but then at times it made me feel utterly terrible.

I do track my mood and symptoms and the spikes are definitely cyclical. I am also very careful with food as carbs make things significantly worse.

If only there was a hormone that could judge your current levels and adapt so we didn't get these highs and lows!

[CLKD]

You may not require VA treatment.  However 

If the body is sensitive to 'vagifem', there is the option of 'ovestin' - and another the name of which I can't remember off the top of my head.

Why does the 'specialist' think that the hormones will 'reset' 

[Emo10]

I think she thinks I'm too young and that my bloods will confirm good hormone levels once I clear the gel out my system.

The ADs are for the sleep and sweats while I'm not on the gel and because I suffer with aura migraines so other oestrogen options are tricky.

Today has been difficult symptom wise. Flushes, heavy painful legs, intense exhaustion and brain fog.

[sheila99]

Peri is always difficult because of your own peaks and troughs, you're guaranteed to have too much or too little of something at some point. The only bright spot is that it does become easier to manage as you head towards meno. Personally I wouldn't take ADs instead of oestrogen as it doesn't seem to be appropriate treatment for oestrogen deficiency. Testing levels is often not very useful in peri as levels can fluctuate so much, it's why the nhs doesn't do them.
 What have they said about the cysts? I thought they could cause spikes and hormone imbalance? Is it possible they are the root cause of your problems?
 Have you considered the mirena may be causing problems? Because it's designed for birth control it has much more progesterone than you need for hrt.
I don't know about your specialist but gynaes are rarely experts in menopause as well.

[Emo10]

Thank you for taking the time to reply, sheila99.

That's also my thinking regarding the ADs and tests I've had. I'm sure someone on here posted a while back about exceptionally high oestrogen levels despite not being on HRT.

She said she wants the cysts fully investigating and is writing to my surgery. The ovary I lost previously was due to a dermoid cyst that weighted over a stone and had to be removed via a laparotomy. It was 21cm high, 20cm wide and 16cm deep!

At this point, I'm considering the removal of the mirena but equally I'd like the remaining ovary gone too!