Perimenopause is destroying me and no one seems to be able to help - what can I do?

[ManyYearsLater]

I am 51 (52 in March). Since the age of around 45 my mind, body and soul have been failing me. I was told by my GP at 45 I was not in peri because I was still having a cycle and experiencing no sweats.

Well, I am still having a cycle and have minimal sweats but boy, everything else is going to pot.

I have suffered with poor mental health since childhood and have expereinced gynae issues and gut issues since my early 20's but it is as though a bomb has exploded in my body.

I suffer from daily anxiety, panic and a feeling of utter terror. It's as though a dial has been turned to the max on my mental health, I can't quite articulate just how bad I feel mentally. I wake up in a panic every day and long for each day to pass quickly so I can crawl back into bed. Nothing, absolutely nothing gives me any pleasure throughout my day to day life. I cry at the drop of a hat and can have angry outbursts too. I feel worn out and depressed.

My 26 year 'battle' with IBS and digestive issues (from mouth to tail) have only worsened over these last 6 years. I have had cameras up, cameras down and scans etc but nothing found so I am just left to my own devices with this issue. I try everything to get my gut health back on track, I eat a basic, low fodmap diet, I only drink water, no dairy, no gluten/wheat, minimal sugar etc. I exercise (walking the dog for at least an hour each day and do some yoga stretches every evening). I listen to hypnotherapy and practise meditation yet still my gut issues continue with daily acid, burping, nausea, bloating, gas, excessive stomach gurgling, constipation/diarrhoea (often together!?) and I have a strong gasto colic reflex so often need the loo soon after eating which is most depressing. I despise my digestive system of late.

After being seen by the same gynae department for the last 12 years and enduring endless hysteroscopies and polyp removals (5 times) and a failed uterine ablation it was discovered via a mri last December that I actually have deep endometriosis and adenomyosis. I am now left on a waiting list until next year to have a laparoscopy. The gynae has been of little help and tbh I am certain he is just hoping that I will soon go into menopause and he won't have to bother with me.

I have had enough. All of my life stresses have come at the worst time. I have elderly parents living near by, my mother suffers from Alzheimers and breast cancer and I help my dad care for her. I have a 19 and 16 year old at home, a very anxious and reactive rescue dog who needs constant training/attention and a poor dh who is often the brunt of my anguish/outbursts. And to top it all I lost my job last week and the thought of job hunting and interviews when my confidence is at an all time low is keeping my awake at night.

My GP has been of little help and because of my history with the endometriosis and failed uterine ablation (any bleeding now causes me excessive pain) and my mum's beast cancer diagnosis, she is loathe to offer me hrt as she says it is out of her level of expertise and tbh I am too scared to take it since my mum's diagnosis and discovering some of her first cousins also have bc (one died in her 60's). The gp has advised I go see an alternative therapist in our local town. I simply can not afford this.

Sorry, such a long and boring post but could anyone suggest anything I could try which will harmonise everything, help slot everything back into place of some sorts. I can't go on with so many of my body parts and mind failing me, I feel as though I am heading for a breakdown.

Sympathy OP - I'm the same age.

Your life sounds very, very stressful even without menopause. Caring for elderly parents is much more stressful than anyone realises unless they have done it.

I'm on AD's due to life long depression/anxiety so I'm not on HRT as I seem to be managing. That said my life is completely different to yours and I have far, far less stress. I do take 'menopause support' vitamins from tesco. They are quite cheap and have good reviews. Lots of people saying they do the same as the expensive menopause vitamins. I know it's a small thing but could you start these as a little bit of support. Maybe you are lacking essential vitamins etc.

I hope things work out for you. I don't work anymore and quite frankly feel incapable of it as I seem so dozy and stupid these days. Quite a change from my sharp, career orientated younger self.

Tesco Health Menopause Support Multivitamins & Minerals Tablets 30s - Tesco Groceries

I think you need to be tested for B12 deficiency too, especially as you've used PPIs. They can really fuck you up.
Sorry it's so hard OP.

Oh OP, you've been so let down by your GP. I know that feeling although I haven't even attempted to get as far as you in many investigative processes.

Any I have, including a peculiar lump in my groin, I never even received the results of a scan for!

I too suffer horribly with IBS. I feel utterly punished for eating and drinking. Any slight anxiety and I can be in agony. Bent double with pain.

I had to go to the GP about something unrelated and she asked how I was sleeping. I told her I am really struggling with waking at night and how it makes life caring for my profoundly disabled child even harder. She suggested less caffeine and shutting the curtains. For actual FS. 🙄

I haven't pushed for HRT yet. Have had tests to check and been told perimeters are normal. I'm aware these mean nothing in terms of peri.

I like others here can hardly be bothered to go to the GP anymore. It's such a rigmarole to even get an appointment nowadays. My supposed women's health specialist GP is utterly patronising. She is simply someone I don't feel I can talk to.

My anxiety hits a peak just before my maddeningly regular period. Dips and then starts to build again just a few days into a new cycle. It's so debilitating and must be destroying my gut. Or my gut is destroying my brain. I don't know which anymore.

Coupled with teenagers and a work stressed DH, I would really be happy to go to bed and not wake up tomorrow morning. Fucking peri.

Look into Maca Root it's considered a good natural alternative to HRT

https://bioidhealth.com/what-are-the-alternatives-for-hrt/#:~:text=Maca%20Root,as%20the%20best%20HRT%20alternative.

My female gynae told me this ?

I would love to see a private specialist but I've lost my job and simply have no money for such funding.

I am very worried, my issues are having a huge impact on my 35 year relationship with my husband. He is a pretty stoic person but there is only so much a person can put up with.
I may have to dig out my emergency credit card, I was very much hoping not to have to do this and would get the help needed via the NHS, it is very disappointing so many women have to turn to private experts for help.

I opted for a uterine ablation instead of the mirena which has been one of my biggest regrets to date. The ablation failed and it has caused the undiagnosed endometriosis to push into the walls of my uterus causing the adenomyosis. I now have a small bleed period every month and it is pure agony.

Had I known that my decades long gynae issues were caused by endo I could have made some informed choices and would have most probably opted for the mirena instead and could now simply add in the estrogel.

No and it's not licensed.

We should not have to struggle in the way that we are, what is wrong with our health system? A quick google tells me there is currently around 13 million women in the UK going through peri/menopause. I wonder how many of them are struggling silently having been fobbed off by their GPs?

I am sorry you are struggling too, sending hugs back your way xx

Is your husband able to help fund a private appt? Savings perhaps?

If this isn't possible, you need to your GP with a list of what you want and basically ask for it.

They appear to have made your situation more complicated than it really is, because of their lack of knowledge.

Print off the info about family history, tell them that using progesterone every day should reduce the effects of estrogen on your endo/adeno, and insist you try HRT for your mental health.

I too was struggling and in the end after getting no where with my GP I went private and got my HRT. The NHS advice was to meditate, I'm post hysterectomy too so I don't even have periods to measure against.
Can you speak to a different GP before you have to get into debt?

I was told by my GP that menopause wasn't a medical problem so he couldn't help. Its disgraceful. I was irritable, angry, depressed, wasn't sleeping and then having to go to work on 3 hrs of sleep a night. My skin itched constantly, I had panic attacks..it was like all the colour in my life went over a period of 12 months aged 48.
I saved up and went to see a private Women's health GP. It was the best £320 I have ever spent. She listened to me for an hour, understood me and made me feel like I wasn't going crazy. She made an action plan for me, in stages that were manageable and wrote to my GP who prescribed her recommendations.
One year on,I am so much better. I still dont sleep well but its improving monthly.
We shouldn't have to go privately, but for me, knowing the cost was capped, I could manage it and it was worth every penny.

For reference OP, the fees for consultants vary from around £250- £350, higher end usually being very experienced consultants.

As a PP says they often write to your GP with recommendations who would usually take over the prescribing.

No birth injuries but I do feel that I have issues with tight pelvic floor muscles due to the decades of suffering from IBS and trying to 'hold' everything in for fear of soiling myself/passing gas etc!

My gp was reluctant to prescribe hrt.
I told her she could either prescribe it for me and monitor my usage and condition or I would source it from the internet and not be monitored. The choice was hers.
And then I reminded her of her duty of care.
She has been prescribing it for me for almost 3 years, I have blood, cholestrol and bp tests every six months.
My life has changed dramatically, my outlook and health are all positive.

Helping to care for my mum for these last 6 years is destroying me tbh. I really do think that I need to try AD's just so I can get through these next days, weeks, months, years (?) watching my lovely mum going downhill. Alzheimer's is a truly wicked disease.

I may take some time out from work for a while even if money is tight. I totally understand what you say there, I too feel so dim and stupid these days. Depression/anxiety ruined my career (I was training to be an optician) and now peri and stress seems to be the nail in the coffin. I just want to sleep and if I have the energy to potter around a garden centre, that would be the highlight of my week. I am not wanting for much in life atm.

Thank you for the recommendation, I am going to Tesco today so will look for those.

Are you hypermobile? If so look up Ehlers Danlos Syndrome. It causes widespread issues including gut symptoms and anxiety and it’s very common for it to get worse in menopause due to lack of oestrogen.

I got Oestrogen late 30’s for permi meno (hysterectomy but kept ovaries) via private gp then transferred prescription to NHS gp, would that be an option?

I really, really do feel for you, it feels as though you are just going round and round in circles doesn't it? I want to scream from the frustrations of not being heard or taken seriously.

Every morning I wake up thoroughly pissed off that night has passed, I hate the waking hours.

It is not going to sound like it but my is husband is a good person but has zero understanding of what I am going through. He thinks I can simply give up caring for my mum and that I need to just think positively and many of my symptoms will ease off. Tbh, I think the whole thing is boring him right now. He says the NHS should be looking after me and most private doctors are a 'rip off'.

So no, sadly my dh will not can not help me and I will leave it there before I rant any further on that subject as it's a bone of contention right now.

I simply don't understand how this can be so complicated for me. I called the surgery again yesterday. They said they have received no reply back from my gynae regarding his opinion/advice on hrt (tbh, I already know the answer to this having formed my own opinion on this person), they said I will need to wait until he replies so I took matters into my own hands and rung the gynae secretary. She said she could not see any correspondence from my GP from September but it could be on his desk. She then went on to say that he has very little knowledge on hrt and would only recommend that I am referred to the menopause clinic and as you have already said, that has a long waiting list. So I have had to email the surgery and pass this message on. My GP is part time and won't be in now until Friday.

Having spend hours and hours trawling through the internet I kind of know what I would like to try. I would like to try Utrogestan vaginally so it does not to put any extra stress onto my already super sensitive gut and then start with the lowest dose of estrogel possible and maybe work up from there. I mentioned this to another GP at the surgery around a year ago and she advised against this, one because Utrogestan vaginally is only advised for fertility issues on the NHS and because (in her words) the tablet form of progesterone causes blood clots. Firstly, I have no clot risk and secondly I know this is not true for Utrogestan but is a possibility with other progestin tablets but hey, she's the GP, she knows best 🙄

It's about time the doctors at my surgery went on some menopause awareness courses.

Why don't you just make an appt to see a GP and forget about talking to reception.
This is about a new approach, forgetting about the non-compliance and lack of response so far.

because Utrogestan vaginally is only advised for fertility issues on the NHS and because (in her words) the tablet form of progesterone causes blood clots

If you come up against this you have to argue back- to put it bluntly and say the British Menopause Society suggests vaginal use for women with digestive issues or who have side effects.

I'm sorry to hear about your husband's stance on all of this.
It's not acceptable, especially if he's happy to pay for non-essentials like holidays or entertainment, rather than medical care.
Presumably you can't access joint accounts where you can spend on whatever you choose? It sounds like it's 'his' money.

For many years I have considered myself to be hypermobile.

I was born with double hip dysplacia, I have struggled joint and pain issues from childhood (which has become a lot worse in peri). My 19 year old ds was also born with hip dysplacia and has suffered from knee subluxations since he was 7. We both score highly on the Beighton scale but I was told by a gp many years ago that everyone is a little bit hypermobile and that was the end of that.

Ds is having to see a private physio because the NHS have completely dismissed him over his regular knee subluxations and have told him he may get to see a physio next year on the NHS.

It's so hard to get though to the receptionists at our surgery. They have also moved over to the Anima app from this week. We are advised to no longer telephone in and we have to send a message over to the surgery first which they will then review. This change has already caused a huge uproar amongst the local community.

Having read through your (and all the other) replies I don't think I am going to get anywhere until I go see someone privately. I am worn out and have no fighting spirit in me right now and I would really like support as I on to hrt and I am not going to get that via the NHS right now.

A few months ago I found a gynae who runs from our local private hospital, she specialises in my gynae issues as well as menopause/hrt. She has great online reviews and is a member of the BMS, which is reassuring.

Fuck it, I will just stick it on my credit card. Hopefully the hrt will give me a new lease of life, I can smile again, get a new job and pay it off in no time

It’s very hard to get a diagnosis on the NHS, most GP’s not clued in unfortunately.

Vik Khullar would be amazing for you to see privately if you could save up, he’s a urogynae who specialises in hypermobility with gynae etc. It’s so worth it if you can find a way to pay.

I think that's the right approach. Go private.

If you go on the Facebook group The Menopause Support Network there is wonderful advice there. They also have a resource you can print off to show to partners. They also do consultations and will then write to your GP with recommendations.

I think you have been treated shockingly

My gods the amount of doctors who have this level of stupidify, us ridiculous.