Saturday, December 30, 2023

Peri-menopause and Fibroids

I've dithered around writing about this but as the year comes to an end it's been such a big feature, especially of the last few months, that I think I probably ought to if for no other reason that one day I'll hopefully be able to look back and think about how glad I am it's over.

There are a lot more books available on menopause and women's health than - well, ever, I suppose. It gets talked about more on television, and advertised more on social media - at least if you're a woman of a certain age, and most of my female contemporaries will make comments about their hot flushes and brain fog. There's a lot of talk about HRT - who it's working for, who's still struggling to get the right balance with it. But really I don't think much has changed. 

My mother, along with a lot of her contemporaries/sisters/the mothers of my teenage friends had a hysterectomy in her early 40s. It seemed to be the go-to option in the 1990s around here (they would all have been seeing the same handful of GPs, and referred to the same hospital) so there's a lack of family experience to call on. Even if that wasn't the case I'd have been away at university. Then home concentrating on jobs, a relationship that seemed serious at the time, and a busy social life when mum hit that age - I wouldn't have been paying any attention. When my grandmother hit that age my mother was living at the other end of the country raising a young family. Generations aren't gatekeeping this stuff, but we're not necessarily listening to each other either.

Regardless of vaguely progressive policies from employers (we have an App, how great are we!) the reality is still that a lot of women fear for their jobs - juggling teenage children, a suddenly unpredictable body and mind, a potential range of serious health issues that are embarrassing enough that nobody wants to talk about them, and added anxiety about sick leave, making mistakes, and being forced out of the workplace - it's not fun. My work is fairly good - mostly because there are a few middle-aged women around who are sympathetic and supportive. My previous job would have been impossible. 

I don't think the majority of my peri-menopause symptoms have been too bad - the weirdest ones are indigestion, splitting nails, an increased risk of static electric shocks, a need to write a lot more lists to remember what I'm doing, and so far manageable hot and cold flushes. Which is good because my GP hasn't been amazing about it so far. After several appointments with the practice gynecologist who insisted I was too young at 48, and then said any tests would be inconclusive at my age I did end up on an expedited endometriosis pathway. Expedited it still took more than a year to get a hospital appointment. It was not a good year due to extremely heavy periods that closer and longer.

Eventually there was an appointment with an examination and 4 attempts to take a biopsy sample. They failed and I had to go for another appointment for a hysteroscopy which is a perfectly foul procedure involving cameras, a lot of water, and entirely ineffective pain relief (they suggest you take paracetamol beforehand). It's painful, invasive, and undignified - nobody is much inclined to listen - medical opinion has been that a coil would fix everything but nobody (and my god have they tried) has managed to fit me with one. Despite making it very clear that I would not consent to another attempt the consultant was still offering to try until he had to admit that the position of the lemon-sized fibroid they found would make it impossible. 

He did get a useable biopsy sample, it instigated 7 weeks of heavy bleeding that landed me in A&E, I didn't get a blood transfusion but it was a very close thing. My iron and hemoglobin levels have not yet properly recovered. During all this I got a handful of contradictory letters. An appointment to have the fibroid sliced out - they will only do this under a local anesthetic here, then a letter to say it couldn't be done in one go so it was;t an appropriate treatment (relief). I can't have a hysterectomy because of previous scar tissue and other issues that haven't really been explained, there's a thing where they put miniature nails into the fibroid and hit it with an ultrasound but this often doesn't work depending on how firmly or otherwise the fibroid is attached - they have no idea how it'll go until they actually do the procedure. 

A chemically induced full menopause was an option but apparently, that's brutal until the right mix of HRT can be worked out. In the end, I was prescribed a newish drug that should mimic menopause but also has, I guess, an HRT element to it. I have started taking it today - side effects include initial heavy bleeding which I'm honestly terrified of. To me, that means floods of blood and clots every 10 - 15 minutes that make doing anything almost impossible for the 2 or 3 hours a day it often lasts and leaves me desperately tired and emotional as well as anemic. The interim pills I was prescribed have not been agreeing with me though, I have a follow up appointment in March to see how the first 3 months have been and a work week which should provide reasonable toilet access (this is the major consideration at the moment, and very hard to explain to anyone who hasn't experienced this sort of bleeding). It has to be now.

All of it makes me angry about the lack of research, lack of options, and lack of understanding for women in my position. The only place where there's much discussion of the new medication is Mumsnet - it's inconclusive but on balance encouraging - it might work, or at least if it doesn't do everything it promises it might do enough. we're half the worlds population, and a significant proportion of us will not sail through menopause. We deserve better treatment and we deserve it now. 


16 comments:

  1. This sounds horrific Hayley. I was teaching when I went through menopause and there was very little recognition of my needs. I hope you can find some relief.

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  2. It's been a rough ride so far, I'm lucky in that my immediate boss is great. My GP surgery is fairly good - not totally amazing but better than a lot of others I've heard about. But it all seems so weighted against women, and so much of it is hard to talk about openly in the work place, or even at home. Friends have made errors at work and now are genuinely worried about their jobs. That's a lot of stress when you don't need it

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  3. Thank you for sharing this. It's important we remind ourselves how little research focuses on exclusively female medical issues. Something good consultants have owned up to to me in the past. I've every sympathy with the inadiquate pain relief. In my case a nurse stationed on each side to hold my hand/hold me down on one occasion was a flag to a less than easy experience!
    I really enjoy your blog, love the cooking and book recommendations but especially value the deeper stuff.
    Good luck, Jill

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    1. Yep, the nurses continuously talking to you and holding your hands is something I'm not overly comfortable with. I get that it can help, but the last time I couldn't get a word in edgeways about the possibility of the promised gas and air, and the add to the pressure to carry on beyond a point that that's tolerable.

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  4. Thank you so much for sharing your experience. It's so important and means a lot to me as someone who has experienced horrendous bleeding since my mid thirties (I can totally relate to the heavy bleeding you describe and having to go A&E for an iron infusion when I was struggling to standup). At 37 I found out the cause was one large fibroid. I went through all the options with gynaecologist and as you say all of them come with even more problems. I felt so upset and alone in my experience. None of my friends could relate to this and one even said to me about the fibroid diagnosis "I would be absolutely devastated, I don't think I would cope" - I was thinking great, thanks for that :-/ I ended up going down the route of acupuncture which has made the bleeding that tiny bit more manageable but is very expensive and definitely not a complete solution. We definitely deserve better and should not be accepting this. I wish you all the best in the journey ahead and thank you for your lovely blog.

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    1. I wish you all the best too. It's hard to explain, or even accept for myself how debilitating it can be physically and mentally, or how insidiously it takes over. I don't find it easy to talk about but increasingly it feels like a responsibility I can't put off. Nothing's going to change whilst if we pretend everything is fine! The new drug I've been prescribed is Ryeqo. If it works it'll be life changing for me, but it's a big if.

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  5. So sorry to hear of your problems, they sound dire. I'm glad you have support at work. Although I didn't suffer very badly, I am very glad to be through the menopause, the hot flushes were one thing, but as for mood swings - all that testosterone coming to the fore was a nightmare and it's left me much more of a grump these days. I didn't have HRT as my mother had had oestrogen-related breast cancer and the GP didn't recommend it in these circumstances. My fingers are crossed for you, your symptoms and treatment, and ongoing support. Thank you for talking about it.

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    1. Thank you - I think at the moment the fibroids are the bigger issue, I don't really know what's going on behind them as it were. At least it's something that will resolve in time.

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  6. Thanks are due to anyone raising what are often witheringly referred to as ‘women’s problems’. It took over 20:years for my daughter’s endometriosis to be accurately diagnosed. Now being looked after by three London hospitals in her mid thirties, there is some hope in the future of new forms of treatment. But I weep when I think of how she’s been treated - by teachers, ‘friends’, employers etc over the years. The more these matters are discussed, the better. And I do hope your own problems reach a satisfactory conclusion soon.
    Elizabeth

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    1. That's awful, I really hope your daughter gets the help she needs. In the scheme of things I've been lucky it's not a lot worse - but the bar should be higher. There's no reason endometriosis should be so hard to diagnose.

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  7. Thank you for writing about your experience. It's just appalling how little attention the research and medical fields pay to women's health issues, as if we were another species! Wishing you the best with this. Having a long-term health problem is so debilitating.

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    1. Thank you! And it is, hard to realise how debilitating until you can take a step back and then it's shocking

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  8. I believe there is a campaign about accessing effective pain relief during hysteroscopy. There are some details here https://www.hysteroscopyaction.org.uk Deborah Cameron in her blogpost of 27 November 2023 highlights the routine dismissal of women's pain and notes that colonoscopy, in contrast is "a comparable investigative procedure [to hysteroscopy, but] which is also performed on men, is usually done under sedation". https://debuk.wordpress.com/2023/11/27/dont-keep-em-crossed-how-not-to-get-ahead-in-advertising/

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    1. I'd heard about the campaign through a friend who had a far worse experience than I did. I have mixed feelings about it based on a lack of trust. The last attempt I had to fit a coil ended with me having to ask them to stop. The consultant airily said she should stop anyway because if she carried on she'd rupture something. I regret not reporting this because I still, more than 2 years later cannot remember it without crying. In my notes she wrote I couldn't tolerate the procedure which subsequent gynecologists have read as low pain threshold - they've then been surprised at what I have tolerated which makes me really angry. That consultant said a general anesthetic would be better because then she could really get in there. Reading up on it there are far more complications, specifically ruptures under a GA. I cancelled the appointment she made for me because I had no faith or trust in what they would do whilst I couldn't call a halt.

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  9. Warm thoughts as you go through this rough time. I hope you can receive some good help and support from Drs and nurses, friends and co-workers. It was just after turning 50 that I noticed changes in my body, and period. Luckily a pap test showed something was wrong, and later tests found Ovarian Cancer. It is SO important to listen to that little voice that says to seek help. I pray something can be found to help you. Take care.

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  10. Just stumbled upon your article about peri-menopause and fibroids. Loved how you broke down the information in such an approachable way. It's like chatting with a friend over coffee rather than reading a medical journal. The personal touch makes it so much easier to navigate these tricky topics. Kudos to you for shedding light on issues that need more conversation!
    I noticed your blog when researching Adenomyosis Doctor. It's an amazing site, and I wanted to thank you for giving such helpful information. "Thank you!

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