Hormone issues not indicating peri...what else could it be?

[perihelpneeded]

I posted yesterday but there is so much I thought a fresh post would be best. I do have complicated health which just doesnt help at all. Ive had abdominal pains for 4 years and then in the last year had a lot of symptoms that felt hormonal to me so I asked if it was peri menopause. My GP was great and did a bunch of tests, some things flagged up and am awaiting investigations.

so far ive had raised calprotectin in 2 stool samples so have been referred to gastro to rule out IBD. This is also accompanied by bowel issues and the abdominal pain. I also have a dermoid cyst that was 3cm in 2022 and has been rescanned last week and is now 7cm so that is now referred to gynae.

I also suffer with chronic pain just to complicate things further but over the last year I have had my very regular periods turn regularish (plus or minus a couple days, usually a 28 day cycle) to being completely irratic the last few months (ive had a 35 day cycle and an 18 day cycle, its really all over the place). I am beyond exhausted, I struggle with fatigue but this is on another level, muscle fatigue where I literally struggle to walk, feeling constantly exhausted, I have terrible insomnia, I get anxious, moody and stressed for no reason at all and honestly so angry for no rational reason. This just feels hormonal on the basis their is no logical reason and I even sit there thinking what on earth am I so angry/upset/anxious about. The last 6 months I have patches where I am just miserable, out of nowhere, for no reason, I can be sitting there and suddenly feel like ive been given the worse news and all I want is to cry and often do, I feel like ive never cried this much, even today the doctor called with results and I burst into tears, its getting ridiculous. I have pain but the pain is worse, joint pain discomfort that is stopping me doing anything and when I actually get sleep, the pain is waking me up. I have headaches so much too. I then have things that feel purely hormonal like breast tenderness so often, a libido thats over the place but mostly excessively high (which is an absolute joy when bundled with all this crap!), period pain most of the time, hot flushes and just random sweating. I also worry that the gastrointestinal issues are hormone related, my bowel habits are completely irregular, my stomach seems irritated a lot, I get a LOT of bloating although I know the cyst could add to this possibly.

I am almost 42 (literally next week) so because of my age, the GP did bloods. Both of the bloods were around 16 days after the first day of my period. The first FSH was 17.1 iu/L and the second was 6.3 iu/L so have been told this isnt indicative of peri menopause.

I cant get an appointment until April to discuss this but when my GP called with results, said its not peri menopause, I asked could the cyst be causing hormone issues and she said unlikely, it could factor for the pain but she doesnt know about the rest. So I now have no clue what to do next. To me this feels like a hormone issue so much, everything feels like it points to that. The thing that concerns me most is that it feels like everything has got so much worse since January and I have no clue what to do now.

I didnt know whether to put this in general health or menopause but thought people in this section may have a better idea with other causes of hormone related issues.

TBH the simplest and easiest way forward is to ask for a 3-6 month trial of HRT.

If it helps, that's what you needed.

The blood tests you had were not done at the right time anyway- they are supposed to be done between days 2-5 of cycle and repeated a month later.

Can you ask your GP to proceed with this?

GPs are notoriously crap at diagnosing perimenopausal symptoms. It needed a consultant gynaecologist at the hospital to confirm mine.

Do you know how old your mother was when she started having menopausal symptoms? The age when starting peri can be hereditary, so if she started quite young, then chances are you will too.

And if your GP won't help, there are lots of private drs (either a private GP or a consultant) who should listen and support you- if you can afford that option.

I've PMd you a name for endo in case you decide to go down that route.

This was my plan this morning, if it comes back normal bloods then buy the HRT myself if needed and just give it a go, but the cyst is a complication. I dont want to now do that in case the change in hormones cause complications or issues with that, so im not sure what to do. I think it just concerns me that its almost doubled in size in 9 months (was 3.9cm in 2024 and now 7.1cm) so dont really want to do anything to cause myself issues, especially given the way the NHS is at the moment, I doubt this will be dealt with any time soon. So im a little unsure what to do.

I have got an appointment for next month so I could ask then but I feel like in her mind this isnt peri so I cant see her doing anything.

That makes things harder, she had a full hysterectomy (with ovaries removed) at 39 I believe it was, so didnt have regular menopause and my older sister had the same at 40, so any immediate family I can look at, I dont have that info.

Thank you so much. I will have a look at this.

Honestly I feel a bit frustrated that getting anywhere with my medical health the last year has been because of paying for things, its not something I am keen on but it is something I can afford to do. Do you think it might be worthwhile? The GP seemed so confident this is not peri but it just feels so hormonal to me that I cant believe it isnt.

With the gastro problems I would lean towards endometriosis rather than peri menopause. Another condition that would need ruling out is high prolactin which can be secondary to thyroid problems and primary due to pituitary problems.
Taking HRT with undiagnosed endo could actually make things much worse.
See a specialist gyni first who can rule out endo or confirm it.
After nearly 20 yrs of misery I was able to have a Mirena coil fitted after DS was born ( since we were TT for 8yrs it wasn’t an option earlier). Mirena was life changing and I enjoyed period-free existence until going through menopause mid 50s. I had few peri symptoms in my 40s and was on HRT for a short time when meno was in full swing.
Was cautious about oestrogen but got by with a low dose that didn’t stimulate the endo.
I wasn’t able to continue on HRT after breast cancer diagnosis.

You mention tender breasts, can you express anything from your breast? This would indicate raised prolactin and is important to mention. Prolactinoma symptoms are basically the same as peri. They tend to burn out with onset of menopause and are often missed. HRT is not the best treatment.

In all honesty if you can afford an initial appt which may be all you need to get answers, I'd do it (they all take credit cards!)

You will get guidance about the cyst and possible endo and possible peri all in one 45mins - 1hr appt.

I agree that some HRT if you have endo may not be right just now, but some sorts of HRT where you use progesterone daily can control the effects of the estrogen.

But you need a diagnosis of what's going on first.

Your mum and sister both had full hysterectomies, and when they were both younger than you are now - may I ask why?

Is your GP aware of this medical history in your immediate family?

@Angrymum22@JinglingSpringbellsit definitely sounds like its worth mentioning endo, im not sure whether to discuss this with gynae when I see them or go straight to a specialist, but as you say @JinglingSpringbells it may be worth paying for an initial appointment to try and get some answers or at least some guidance.

I feel like I cant afford to do anything to make things worse, but the thought of doing nothing with things staying like this is not great so I think I will explore seeing a specialist.

With my mum im not completely sure, I dont have a relationship with her. I remember her having a lot of issues with stomach pain and periods but dont know what the cause was, but know she had a full hysterectomy. I remember her struggling with pain a lot before.

My sister had pcos and struggled a lot with pain and heavy bleeding to an extreme level, they tried ablation with no luck and her issues only stopped after her hysterectomy. My younger sister also has pcos. The GP was aware of all this and did put this history in my info when I had my scan last week.

I think if the GP feels strongly this isnt peri then I need to ask what else it could be, because something is happening and yes they are waiting for referrals for this cyst and the gastro stuff but that doesnt explain a whole bunch of what is happening, so I will just have to wait for my appointment in April to ask that question.

@angrymum22@JinglingSpringbellsthought I would come and update as I finally saw gynae today after a lot of pushing and you both called it way before anyone medical did. The gynae believes this is endometriosis so has suggested a progesterone only pill while I wait and doesnt want me to use any other HRT until this cyst is removed and the surgery waits are over a year. But they will check for endometriosis at the same time as the cyst being removed, but she said the pattern fits endometriosis so she thinks this is what is causing my pain.

If this is any help, I felt awful from ages 43/44. Am now 45 and had settled down.

One thing that helped was getting on top of pain. I suffered terribly with migraines and it was wearing me down - I didn't realise how bad it was making my mood until I found pain relief that worked. I think if you root out what is causing the pain you may find relief and the hormonal stuff is easier to deal with.

So glad you are getting answers. It’s good to have a diagnosis but don’t expect solutions.
For me the turning point came after my DS was born and I had a Mirena coil fitted. Of all the treatments this one gave me back my life. With no periods ( occasional spotting) I remained pain free-ish until I went through menopause.
I had the coil replaced when I started to experience monthly cramping, around four years after placement. And bonus was it made peri menopause and menopause much easier. It is also used alongside oestrogen as HRT.
Mirena coils are a bit like marmite but for someone with endo the side effects are far outweighed by the benefits.
In fifteen years I used one or two mini tampons compared to pre coil where I used two boxes of extra large tampons with maximum absorbency pads for 7 days, in addition to maximum dose of painkillers throughout.
I have got permanent damage to my bladder and bowel along with lots of adhesions but the pain level is minimal.

I honestly think it was only you two suggesting endometriosis that made me think about it and then I realised these pains started a few months after I came off the implant.
The gynae has suggested the progesterone only pill for now, as she said the wait for surgery is over a year, but she said she can then put the mirena coil in for me after the surgery so its done while im under which I said I was happy with.
Just hoping starting on this mini pill will help a little. Do not look forward to another year at least with this cyst as it already causes enough pain on its own but if I can get some relief from this awful cramping pain with the pill, I will be happy.