Does anyone else experience a hormone cra... - Endometriosis UK

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Does anyone else experience a hormone crash instead of normal pms?

x_emily_x profile image
18 Replies

I used to have mild pms, feel a bit groggy and barely crampy and then have an easy healthy period. With endo, and its gotten worse, I get this huge hormone crash. (Not including pain and other symptoms just mood and the way the hormones feel)

It feels like pure cortisol being pumped in excess around my body, excess cramping hormone and I get really, really low. In the beginning before I knew what was wrong I thought I was losing my mind.

Now I know when my period is due because I get major depression where I lose the will to physically move, waking up crying and struggling to feel any joy. My mind seems to want to remind me of all the worst things.

I get hot flushes, hormonal headaches and migranes and my skin becomes hyper sensitive, flaring up at almost anything.

I used to use dragonbalm back patches to help with muscles and recently they cause my skin to blister, after 4 years of using them with no problem.

I'm also allergic to rice now after eating it with no problems for years.

I also become hypersensitive to pain. Even light touch can hurt.

This is my pms now...

Has anyone else experienced anything like this?

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x_emily_x profile image
x_emily_x
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18 Replies
AllthatGlitters profile image
AllthatGlitters

Hello yes I have a terrible time with my hormones. Up and down constantly. Feel ok one minute then the next hot flushing or just not feeling myself, bloating and fatigue are a massive problem for me. I am also very sensitive to touch, I have fibromyalgia and CFS. As if having endo and adeno isn’t enough to cope with every day.

I sometimes read that people with gynaecology problems can also suffer with fibromyalgia, I’m wondering if it’s linked 🤷‍♀️

Anyway feel free to reach out to me on Pm if you ever need a chat / rant xx

x_emily_x profile image
x_emily_x in reply to AllthatGlitters

Thank u lovely I have cfs too, I don't know about fibromyalgia but I have heard of the link between that and endo x

DarkStar85 profile image
DarkStar85

Yes I can relate to the hormone crash. At ovulation and my period I get what feels like hormone surges, I feel like electricity is running through me, migranes, dizzyness and then crashes where I can hardly open my eyes in the middle of the day due to fatigue. Feel low too. I don't have a thyroid and believe this plays a part for me as I feel my meds need adjusting. Might be worthwhile getting thyroid profile bloods checked.

x_emily_x profile image
x_emily_x

Yes this is exactly what I mean...You know, this site is the first time I haven't felt crazy. So many experiences seem to follow the same lines or are just plain identical. I've had a lot of blood tests but they haven't always told me what they've been for but it is worth asking, thank you.How do you cope with the fatigue? There have been times I've slept from 16-20 hours straight and still wake up exhausted, only getting up to drink water, go toilet or eat before passing out again. I've had 2 occasions where my body wouldn't let me sleep for a long time as well. The docs tried to blame stress but I know that's not what it was. I felt the hormones surging through me.

I still have an unnatural amount of fatigue and struggle on my best day. I have a routine as best I can and do what I can lifestyle wise but rest seems to be the only thing that doesn't make it worse. What do you do? X

DarkStar85 profile image
DarkStar85 in reply to x_emily_x

It's very hard to deal with fatigue. I have 3 young kids all at school, homework and after school clubs. Cook 3 different dinners a night. My thyroid is messed up so adjusting my meds will hopefully help. I had a thyroidectomy after cancer. I just have days where I don't get much done and rest as must as possible. Try to eat as healthy as I can but not always easy. Take vitamins, im on iron as my iron is low, get that checked. My husband is a good help too. Hope you find some relief x

x_emily_x profile image
x_emily_x in reply to DarkStar85

Bless you thats a lot to manage. You truly are a warrior. You need those rest days x

Escapologygirl profile image
Escapologygirl

Thank you so much for posting this, I thought I was going nuts but this is my life too. The constant sleeping and fatigue is ridiculous and no idea how you can get diagnosed cfs or fibromyalgia. I'm currently due my period in next couple of days and all month long I'm constantly exhausted and sleeping but this week I'm even beyond stupid out of it. No energy at all.

x_emily_x profile image
x_emily_x in reply to Escapologygirl

Woops accidently replied to the wrong bit

x_emily_x profile image
x_emily_x in reply to Escapologygirl

Its recovering then waiting for doomsday again then recovering again... physical symptoms aside its emotionally exhaustingYou're not alone 😊 x

And idk either tbh its an uphill battle getting diagnosis. I even had one gp, who I no longer see, tell me chronic fatigue isn't a real symptom. Outrageous really.

Escapologygirl profile image
Escapologygirl in reply to x_emily_x

Oh the medical gaslighting is beyond ridiculous and thank you for your reply. That's exactly what its like, the constant loop of feeling utterly rundown having been run over several times by a fleet of buses and then suddenly a couple of really good days where you feel almost normal again and then the loop starts again! Its like being trapped in a centuries old persons body but even they'd probably have more energy than we do!

x_emily_x profile image
x_emily_x in reply to Escapologygirl

Yeah, sounds weird but in the beginning I would feel guilty about not working when I felt well. I've stopped that silliness now.

Escapologygirl profile image
Escapologygirl in reply to x_emily_x

I've not been able to work since Feb 2022 and my gp is not declaring me fit for work anytime soon and I'm only 45. Went for a walk to the local shop today and on the way back I felt like I was climbing everest.

Rainbow2468 profile image
Rainbow2468

Sounds also like peri. Menopause as I have a lot of what you describe just awful, sending you a big hug x

x_emily_x profile image
x_emily_x in reply to Rainbow2468

They tested me for peri the beginning of this year and said I was fine but the hot flushes are odd Menopause isn't fun, big hugs to u 💓

Cocoacupid profile image
Cocoacupid

hi Emily I suffer with extreme pain and the doctor I saw today in pain clinic said to me I reakon you have fibromyalgia aswell as having allergies and sensitivity to different things and. Also am on the wait list for suspected autism as well. When someone suffers from pelvic pain it effects every aspect of the body as I suffered for pain for a while she also said it would t surprise her if I had bladder cystitis all the time and also ibs or some kind of something going on with my bowel. I also get anxious and depressed too . For me I was glad my gp referred me to the pain clinic as The lady doctor was so understanding and also know s my gynecologist consultant and also my pelvic floor specialist I saw also. So it is possible to have a systemic nerve problem as well as just pelvic pain. Sending hugs 🥰

x_emily_x profile image
x_emily_x in reply to Cocoacupid

Thats so much on your plate, I'm sorry you have to deal with all of that. They have said fybromyglosia tbh but I don't understand it lol and yes there's definitely some nerve issues but time will tell. I never want to assume anything, but I'm sure with time everything will become clear and I can know exactly what I'm dealing with. Its always helpful to hear others experiences. I hope things get better for you as well darling x

Cocoacupid profile image
Cocoacupid

thank you Emily . I’m having to now cut back my hours at work slightly as my body crashes as they have given me hours well over my contract and it breaks me so much. The pain clinic dr said I had to either cut back my hours or do shorter days at work which would mean I would have to work nearly every day to fit my hours in as the norm is to do 12 hour shifts which I now physically am unable to do. I asked my friend how much she got for a certain amount of hours and she told me and I think I can survive on that a week as get paid weekly but also one every four weeks get pip as well so to be honest I think I can cut back slightly . As my boss said she can’t do anything this side of Christmas as she has done all the rotas up till the new year she said after Christmas she would cut them down for me . The dr also said to not give up work for the min even though I struggle as she said they’re are people she sees and she said there biggest regret was that they gave up work completely and then they couldn’t then work . She also said I think it’s wise to try to work as she said if you give up work your mental health with definitely suffer. Xxx

x_emily_x profile image
x_emily_x in reply to Cocoacupid

I understand why you were given the advice you were given and I very much understand the struggle trying to work with pain and exhaustion and the impact of that on your finances. For me though, the best decision I ever made was leaving work. It was so hard at first but thats because I had neglected my health for so long. I have had the time to learn how to manage my illness, learn about it and start to get the treatment I need which has been not a battle but a war, but after only two years I see a life in my future full of work, activities, experiences and livable management of my chronic illness. There is still a lot to be done and no doubt more tears to shed but I would have never been able to get even close to this if I hadnt have left work. And this is before I'm getting the treatments and support I need, this is just what I know and how I feel. I was literally in a&e yesterday and I'm needing more urgent care this weekend and yet this is my mental health atm. Determined, hopeful, optimistic and focused. I couldn't have done this trying to balance work and all the problems that came with it as well. Im not saying its the best thing for you, but I am saying only you know the best thing for you. Everyone opposed me leaving work but honestly I would've ended it all if it carried on the way it was before I left. I have every intention of rejoining the work force when I am actually well enough, and no sooner. I'm in it for the long run and I feel very strongly if I rush back to work I will only damage myself and my future in work in the longrun. So this is really up to you what to weigh up and how this is going to effect you/ what you want for your health, work and life.

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