Perimenopause is kicking my ass

[80smomma]

Sorry - this going to be long...

I am 44 and to say my whole gyny health journey has been turbulent is an understatement. Started periods at 11, on the pill at 15, had very heavy painful periods, diagnosed with fibroids and a "bulky" uterus in my late 20s (I suspect potential adenomyosis), 3 children delivered by C-section. By my 30s I was bleeding for half the month, soaking a super tampon and towel within 40 mins. Declined multiple offers for hysterectomies, then had a coil fitted in 2018 - botched and now stuck. In 2019 (age 38) I had an endometrial resection which stopped my periods. Hurray! but I continued symptoms of PMS and started with a horrendous pain in my rib in 2021 - initially diagnosed as costochondritis, referred to an orthopedic specialist who has ruled out anything "nasty" and now I'm just floating in the system, waiting on a referral to a gynaecologist again.

Since my 40s I have noticed a variety of worsening and new cyclical symptoms - brain fog, anxiety, aching hips, the rib pain, return of period pains, pelvic pressure, frequent urination, swollen painful breasts, jaw ache, very emotional phases/low mood. A real mix of psychological and physical.

I started HRT (conti patches) a year ago but switched to oestrogel (3 pumps) and oral 100mg progesterone in November. I can't say I've noticed any major improvements. I don't really get hot flashes (v.occasionally at night) so it's more the emotional and other physical issues I want to deal with. I am slowly returning to my old mindset of planning events and dates around my symptoms which is really sad.

Over the past 6 months I've tried taking rhodiola, magnesium, vit b and d, collagen, and now I'm just taking a daily antihistamine and lions mane. It's all a bit of a guessing game.

I've cut down on/out alcohol, get regular exercise, listen to hypnosis/relaxation etc.

It's worth mentioning I have a family history of breast cancer but the genetic team said I could have a yearly mammogram and said I was okay to try HRT.

I am in the position where I just don't know if taking HRT is helping - or potentially making things worse (like my fibroids, fibrocystic breasts) and what to take that will actually give me some relief. I'm sick of popping pain killers and losing several days a month due to feeling rubbish.

Having a really crap day hence my really long message.

Just after any advice, things I've not thought of.

Oooh that sounds like a lot op.

Why did you turn down the hysterectomy? Have they had a look inside to check for endo/adeno?

At your stage with all of that, I'd be begging for them to take the whole lot out and sticking with high dose oestrogen for the moods and being able to ditch the progesterone.

I have a mirena and it changed my life. But I'd be bloody furious if it embedded and they didn't offer to remove it.

I was about 34 when I was first offered hysterectomies - I had 3 young children (youngest was 2y) and knowing how long my recovery from C-section was, I couldn't put myself through it. At that point I just wanted an end to the heavy bleeding.
The endometrial resection did that. But it didn't stop all the other shit.

My mum had a hysterectomy about that age too and she had hormonal issues thereafter, breast cancer and couldn't take HRT so that plays on my mind.

They couldn't remove the coil as it's lodged at the front - they said, given the scar tissue and located near my bladder it was safer to just leave it. I had an MRI to find it. Yes, I was angry - I told them from the start it wasn't fitted right!

Never had a laparoscopy, just a hysteroscopy - which is when they realised the coil wasn't there (the strings were). Very scary.
They were looking for fibroids - they didn't see them (they're within the wall and only spotted on ultrasounds)

Would you consider asking for the hysterectomy now?

I don't know! I am quite frightened if I'm being honest. My cousin had a bad experience.
I've been told it wouldn't be a vaginal operation, I would need to be cut open again and that is really scary.
I am really hoping there might be another option (maybe that is naive).

@80smomma oh goodness yes I can imagine that would be scary. I've had a prolapse repair but that didn't cut into my stomach.

But I think you need some perspective. Are you able to see a private gynae - get recommendations see someone you know you can have a proper serious conversation with to give you advice?

I have just made an appointment with a private gynaecologist. I can't keep waiting indefinitely to get an appointment with the NHS.
You're right - I need to get some perspective. When I feel okay I am able to crack on and I don't really think about it but when my mood drops and my whole body feels like a bag of shit it's hard to think straight!

That sounds like the best plan.

Can I suggest you do a typed document for them in advance with your whole gynae history that you think is relevant. Send it to their secretary.

They can read it, look at your notes etc and be informed so they don't waste time. I'm sure they will still discuss your history but this gives you a flying start.

Thank you - yes I have sent something similar to what I shared here (without the swearing ha ha ).

Yes please go and see a private menopause doctor . They saved me ! I now take progesterone vagianlly and consistently with no breaks. I was bleeding all the time it was a nightmare but now I don’t bleeds anymore at all . They also sent me to get properly checked out a the hospital (this is all referred and on the NHS). My GP was no help really so glad I paid a bit and got everything resolved

What made you stop bleeding? 46 and on day 12 of period. Got an iron injection 2 weeks ago but I probably bled it all out.

@80smomma How's your iron levels? Mine has always been very low but since I've started getting brain fog, low mood and just being exhausted without having done anything at all I wanted to make sure it wasn't iron deficiency as well as perimenopause fucking me up. Like you I got the occasional night sweats and also wake up at weird hours with strange aches in left hip (wtf). I'm so happy my dc are boys because it's such a pain being a woman. I'm more tired than my 82- year old mil!

@TheBlueKoala They changed my dose of progesterone in the HRT . The normal dose is 2 pills a night for 2 weeks then a break for 2 weeks . I’ve been put on 2 pills consistently with no breaks. Also I pop them into my Vagina instead as the progesterone was making me so bloated etc.

Thanks for sharing your experience. This is really interesting! I have read about vaginal progesterone and how some people don't tolerate it generally. I take 100mg each night, continually. Because I don't have periods they used that as a basis on how to take it - despite my periods only stopping due to the resection, not naturally.
I had to request to switch to micronised/natural too.
It's all so one-size fits all when clearly our bodies are so different.
How long was it between starting HRT and you starting to feel better?

My iron levels used to be low when I had periods.
My last blood test all came back normal.
I don't really understand each individual element they look at but some of the ranges, I was sitting on the line. When compared to a previous blood tests - some parts were higher, some were lower. I read that normal ranges are based off a middle aged white male!
I also have phases of feeling quite exhausted - I've slept a lot the last 2 days. And sometimes the tiredness feels like it's my head, not my body - if that makes sense.

I hope the private gynaecologist can get the ball rolling.

So, last night I tried my progesterone pill vaginally instead of orally.
I was already feeling pretty tired from an emotional few days.
I woke up this morning at 8.30am (it's usually closer to 10.30am as I'm still so tired). It could be a fluke.
What other improvements did you find from taking it vaginally? And were you told by your GP to do it or chose to yourself? And did you tell them?
Thank you