Does anybody else suffer from endo relate... - Endometriosis UK

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Does anybody else suffer from endo related dizzy spells or vertigo?

gemmap profile image
18 Replies

I've been suffering with this on and off since June I started when I was on no hormones was fine when I backed to backed my pills had my second break on pill for bleed and started with it again feel dizzy when I move my head worse when tired. Any comments or advise would be great x

18 Replies
Cooka profile image

Yes, I have been suffering undiagnosed dizziness for 2 years. Every test taken re. inner ear, CT scan... everything came back normal. The docs always pinned it down to anxiety. Now reading up about endo and hormone imbalances/severe pms I'm thinking it's hormone related and part of severe pms caused by hormone imbalance. Endo usually goes hand in hand with hormone imbalance. Normally estrogen dominance. my naturopathe agrees that I've been held hostage to my hormone imbalance and this in hand creates endo, anxiety, dizziness....

Allemarie profile image
Allemarie in reply to Cooka

Have you got a diagnosis yet? I’ve beeb suffering from dizziness for the past two months and I’ve had the same problem.. got all these tests done and nothing.

Pinkgirl profile image

I suffer from dizziness and feeling like I'm going to faint. It always seems to happen on the first three or four days of my period. I have had this both taking the pill and not taking the pill. I always assumed that it was probably to do with the really heavy blood loss that my endo gives me, in conjunction with it's other symptoms. I haven't seen the Drs about this though...planning on mentioning it at my next gynae appointment.

sparkledancer profile image
sparkledancer in reply to Pinkgirl

I feel like I'm going to faint too - had it really bad again on Saturday...about three days in a week I get it on average. I read that dizziness is one of the symptoms of the condition. I never had it when I was first diagnosed with endometriosis back in May 2012. It is awful when I get it - and find I have to rest a lot when it happens. I feel really unsteady - I have even thought of buying a walking stick, to give me confidence when out and about. It is really scary actually. I had my blood pressure taken and that was fine.

wp22 profile image

I have it and I am anaemic x

Lizzer profile image

I get dizzy and pass out. Particularly in the morning. First they thought it was epilepsy but it only ever happened with period pain. I had to suspend my driving licence for 3 months after I was taken into A&E after a morning of extreme pain and multiple fainting. Then got diagnosis of cysts, which led to endo diagnosis, and vasovagal syncopy diagnosis for the fainting bit. Now if I feel dizzy I resist the strong urge to go to the loo (which always seems to accompany it) and I find a place to lie down, legs elevated if possible and concentrate on being calm and waiting for it to pass. Usually it does, and If i do sometimes faint I'm less likely to injure myself. I changed my work hours to start an hour later in the morning - the worse fainty times. Take it easy as you dont want to be fainting, or worse getting worried about fainting. I still faint sometimes but dont worry about it so much. VasoVag was a good diagnosis for me as it is a real physiological thing so not just 'lady-madness' and it doesn't mean a driving ban. Good luck.

sparkledancer profile image
sparkledancer in reply to Lizzer

It is awful that you actually faint. I dare not drive right now - waiting to go back and see gynaecologist - need it confirming that got endo back.

gemmap profile image
gemmap in reply to Lizzer

thank you for your reply that sounds terrible great that you have found a way of coping with it but sounds terrible. hope your feeling batter at the moment x

Ppdotter profile image

Hi there yes I've had bad dizziness and vertigo since I've had endo. All tests were normal and I have anti sickness/dizziness pills to help now, stugeton. It's an awful feeling I really sympathize. One thing to watch out for is that you aren't anaemic. Even if they say you aren't I would bulk up on red meat and iron rich foods as iron levels can fluctuate especially if your periods are heavy. Hope this helps a bit x

gemmap profile image

hi everyone thanks so much for your replys i feel so much better about it now that i know im not going mad!!! im going to book an appointment with the gp ask for blood test as not had one in last 2 years currently waiting to have MRI to see about ando and another laproscopy in the next month or so too. I find it really hard with this as i feel very poorly when it happens and very disorientated doc said vertigo back in june but honestly i think thats just a cop out! im trying my best to stay focused at work but feel like iv got brain melt at the moment memory has gone terrible.

red meat is great but think i will have to look into alternatives as im trying to do endo diet and as far as i can tell you carn eat red meat due to the hornones im only doing it about 85% of the time anyway. so i will bulk up on spinach and all the good greens..

once again thank you so much for your replys they are so helpful.

sparkledancer profile image
sparkledancer in reply to gemmap

I hope it all goes well for you. Interestingly, I went to see my GP today who thinks my hormones are playing havoc (which might explain my feeling of feeling faint too alongside other symptoms). She has stopped my pill - prostegoen (cannot spell!) one called Cerazette. I will see if I improve. I am not allowed any pill until the hormones settle down.

Tinafroggy profile image

Hi there I too suffer so badly from vertigo that started 6 months ago! And I have really bad pains from cycle and ovulation! I’m getting a complete hysterectomy next week and I am just praying that the vertigo goes away too once everything is out! At least I know I won’t have the cycle & ovulation pains anymore! Anyone doing better now and what helped you?? Thanks!

in reply to Tinafroggy

I am currently suffering from really severe vertigo attacks which last hours with violent vomiting and even diarrhoea. I've had postmenopausal endometriosis for the past 15 years. I don't want to upset you but a hysterectomy isn't always the cure we hope for and the vertigo spells I get are horrendous. No cause has yet been found but my only health problem is endometriosis which has been severe. Good luck with everything.

Tinafroggy profile image
Tinafroggy in reply to

Hi there,

Thanks for the reply! Yeah I had my hysterectomy 6 months ago and they found tons of endo and my dr scraped all she could. She said don’t add hormones back for 2-3 months and thatcthe leftover endo cells would die off. Well I waited 4 1/2 months I started the really very low estrogen patch cause my migraines were getting super bad. So the patch helped with that immediately but unfortunately the endo starred to grow and I felt cramps again just in 6 weeks of using the patch! So scary and awful to go thur all that I feel like I had gotten rid of it all. But I did get my hormones tested and I had 0 progesterone!! And that counteracts the estrogen and endo cells trying to suppress the growth. I’m hoping I caught it early enough. Don’t know.. started bio indentical cream with estrogen and 100 mg progesterone. But just trying to find a balance. If I didn’t get these awful migraines I would have never added estrogen back! Still have the vertigo too. I think that’s a separate issue for now. We will see praying I can get the endo under control!’

Telli686 profile image

This really made me think, as I do actually have (rarely but still often enough to notice) what I call dizzy spells, usually when I wake up and the entire room is spinning to the point I can't move for hours till it passes. I don't know if there is a connection to endo as I still haven't been diagnosed yet, but it's a strange coincidence! However I do remember when I was on the pill having extreme dizziness to the point I had to come off them it got so bad. Potentially could mean you need a different pill, I hope you find answers soon xx

Yes, I have very disabling severe vertigo spells which last for hours and cause violent vomiting and diarrhoea. I have very severe postmenopausal endometriosis. I had a hysterectomy 15years ago.

I wonder if this vertigo is related to my endometriosis as it's so dreadful and I'm not suffering with anything unrelated to endometriosis.

Tinafroggy profile image
Tinafroggy in reply to

Hi has your vertigo improved any? Not mine it’s been 1yr 6 months I’ve had it. I had to stop all estrogen as it was feeding the endo cells that grew back! Obviously not all were removed during my surgery. I’ve nene doing acupuncture and Chinese herbs to help me balance. The acupuncturist really believes it’s all from the hormones and endo! She does believe 100% I can heal from this with her help. Will post more later with any updates to help others!

Hi, I've been diagnosed with Meniere's disease a few months ago. However, I can't help but wonder if there is a connection somewhere to my severe endometriosis. It may well be the case even if a connection isn't known about at present.

Good luck!

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