Could this be Endometriosis?

I have had horrendous periods since my first one and this stuff is NOT new for me, but something I have lived with ever since my period began. For me this means nasty 'period pain' which is absolute agony and feels like a rabid possum trying to chew it's way out of my body. This pain is by no means confined to 'that area' either, it's in my back, down my legs, and I get stabbing pain in my diaphragm area just from breathing. This stops me from living for three to four days each month and is accompanied by everything from 'flu type' symptoms, flooding 'period', looking like a ghost, feeling extremely drained, feeling dizzy, feeling faint, feels like things are crawling on my skin, to really strange shit like extreme changes in my body temperature (one minute I'm freezing and the next roasting alive), uncontrollably shivering no matter what the external environment is like, similar to fever symptoms, can't think straight, can't concentrate, seeing spiders/animals/weird stuff that's not there etc.

This sometimes goes on to the point I'll actually become delirious and talk nonsense, like last month I apparently kept saying strange things like 'oh it's such a hot day', when it was actually pretty cold, 'unicorn eggs', 'oh my, look it's raining spiders' and incoherently chattering but I have no recollection of this. This is quite 'normal' for me. Once it gets to this point, it's impossible to sleep and if I do it's like being half asleep and I'll wake up after about half an hour freezing or roasting and saying strange things, no idea what's going on, and in absolute agony. No medication I have tried as ever worked and just like a bad flu bug, it has to 'run it's course'. I've had nasty periods since I got my first one. Yeah, it might sound funny but I assure you, it's NOT.

Not all these nasties happen EVERY month, but I never know when it'll get this bad so I have to keep 'nasty week' free of anything that can be spoiled by it as if it does get THIS bad I can't even get out of bed without having to literally drag myself along the ground. I don't go out or mix with anyone who doesn't know about it and what causes this either, to say it's a horrible restriction on your life is an understatement.

Yes I've seen doctors, I'm fine for 98% of the month, and there's nothing physically or mentally wrong with me. I can't take BCPs as they just make it 100 times worse (if it's possible for it to get any worse than this!). I thought I was going mad but no, this is apparently within the realm of 'normal' I've been told, and that the 'incurable' pain is responsible for some of the 'weird things' but I don't know, there must be more period related stuff going on as well as pain because this is soul destroying. Nobody has ever taken me seriously or considered anything beyond 'period symptoms'. Those who deny a 'natural' thing like a period can cause this kind of misery are so very WRONG and have obviously never been through anything close to it in their lives. I absolutely agree with the term 'women's curse'!.

7 Replies

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  • I would write a pain and symptom diary during your periods and ask the GP to be referred to a gynaecologist who you can show this evidence to, say how much it affects you each month and mention the possibility of endometriosis. I ended up diagnosing myself with endometriosis from what I read of the symptoms online and asked the doctor to refer me to a gynaecologist because I thought I had endo and I turned out to be right. The only way to diagnose it is through a laparoscopy. I had this after an ultrasound scan showed endo cysts. I hope this helps.

  • I've been trying for a long time. Thinking about changing my doctor after Christmas so may have more joy then.

  • It's truly horrible. The pain is easily 9-10, bad enough to cause me to collapse, and have those horrible 'delirious episodes' where I have no awareness of what's going on, feel totally disorientated, have no sense of time, can't put a coherent sentence together, can't sit up let alone stand, feel sick, and eventually collapse if I try. It's like having a full blown flu virus every month. The fact it skews with my body temperature also plays a big part in it. Sometimes I feel very hot externally to others but feel so cold I've got loads of sheets round me. I think there is a link between this and the 'delirious episodes' too, as it's reminiscent of what a really high fever can do and I feel the same if I get a fever. It feels like that and the pain is simply too much for my body to take and it gives up on me. I feel like I've lost so much of my life to this. =/

  • Yes I would change your doctor until you get someone who will listen. I have had many doctors over the years who didn't listen and I kept changing until someone did. I understand that this is difficult when you keep trying and are feeling so tired but it's worth it in the end. When I saw a gynaecologist for the first time about endo I remember filling in a form about the pain levels and how much I can do whilst having a period. I would ask to be referred to an endo specialist consultant in a BSGE centre if possible. I would also get your thyroid and iron levels checked alongside endo as that may be an extra reason behind the temperature and some of the other symptoms you describe above. I have an underactive thyroid and low iron levels as well as endo and I have read about others in the same boat so it's good to get it all checked out to be on the safe side. I really hope that it all works out for you and you get the treatment you need so you are suffering less each month, best wishes.

  • You could be onto something with the Thyroid. I had mine checked a couple of years ago after a particularly bad 'delirious episode' when I was trying to convince my husband I was not going insane or dying after he found me collapsed on the bathroom floor, unable to even sit up, and 'out of it' talking gibberish nonsense about everything looking 'too big' and I thought a day was 48 hours long, and freaking out, but it came back 'normal'. However I do know Thyroid levels fluctuate, and catching abnormal hormone levels can be difficult and require more than one test. One Thyroid issue I know can cause these symptoms is Hypoparathyroidism. That's renowned for causing 'delirious behavior' and I have every other symptom too. Also sleep is an issue, as I often wake up roasting and delirious yet again, have a flap because I feel like I'm stuck, lost or in a really dangerous situation. One time I thought I was strung up in a cave between two corpses, another was a full blown zombie apocalypse which was happening outside, (it always takes on a dark, disturbing theme). It's like a twisted rerun of whatever I've been up to during the day. One time I'd been playing Pokemon Go (yeah I've got a huge Pokemon problem lol), and my disorientated, disordered mind thought some unseen force was throwing Pokeballs at me and I was jumping around in bed trying to avoid them.

    I have other strange symptoms which go along with this like hoarse voice, sore throat, blocked/running nose, aching joints, headaches & migraines, this strange 'electric zapping' sensation, pins & needles, very cold feet, feeling sick, dizzy spells, fainting/collapsing from pain then coming round and being delirious, shaking, palpitations, fever/extremes of body temperature like my internal thermostat is skewed, twitching muscles, stabbing pains, 'cold burning' sensations and that's just to name a few. =/

    I've not had much luck with my current doctors, and I intend to change after Crimbo, partly because of my chequered medical history and partly because nobody can see past 'period pain'. This is as far away from being just 'period pain' as the North Pole is to the Sahara.

  • I hope you find a doctor who will listen and definitely get the thyroid checked out again as mine came back normal a few times until one occasion it wasn't and then they tested my anti-bodies to find out I had Hashimotos. I had a very long list of symptoms before they finally worked it out so it's worth it to ask again, I hope it works out for you.

  • Good luck with the change. A good GP makes a transformational difference I lucked out finding one whose spouse worked as part of a Bsge team. Dont take no for an answer.

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