I’m new here been lurking about trying to see if anyone posts about what I am going through so thought I’d post myself finally!
I have been going to the doctors since I was about 21 in relation to these episodes, and they still have no idea what they are. I have fought long and hard and tearfully to get my latest referral to gynaecologist and I’m so close to a lap. But I had a really bad episode a few days ago and it’s worse than ever before - has anyone ever had the following??;
Around the time of my period sometimes before I’m even on, it can be triggered by sex or the start of my period, I get an onset of severe abdominal cramps. Severe period pain happens every period but what’s different about this is no painkillers penetrate it (I take cocodomol 30mg, ibuprofen and codeine top up - I have genuinely tried everything and I take it early because I can usually sense it coming on now I’ve had so many)
It lasts around 30 minutes but recently has been creeping up to an hour long. It is so bad I am sat on the loo with diarrhoea, I feel sick, I go completely white and sweating and have to take all my clothes off and I can’t even speak for the pain. It’s like an out of body experience. This used to cause a panic attack but since I’ve got more used to the episodes the shortness of breath and weird cramping of hands and up legs doesn’t happen anymore. I never used to actually BE sick but the last two episodes I have vomited into the bath whilst coming out the other end too it is truly the most painful and awful experience I’ve ever felt. I haven’t had a child yet but it feels like what I imagine labour is. Any change in light, smell, being spoken to, i can’t focus on anything but my body. The pain is constant and unbearable, it eventually subsides and I will get a little pause of cramping and the pauses slowly get longer Until it becomes a manageable pain that seems to respond to the I am then left drugged off my tits (lol) and exhausted and wiped out for the day.
I am lucky I have the support of my fiancée bless him but it’s worrying and awful for both of us. I know I am so close to a lap which feels like the holy grail right now, I have a second ultra sound on the 28th May so this gyno can see for herself, I’ve had inconclusive US they saw a mass on my left ovary and wrote ‘potential Polycystic ovaries’ and only when I questioned this man doing my tests after I got fobbed off with ‘ibs cramps’ , I had to put pressure on my GP to run my bloods for hormone levels and they came back high in testosterone. I’ve since had them done again with the gyno and they came back normal. I don’t have any other PO symptoms. I’ve also been through like a year of going through the bowel elimination route and it is all clear. I do have IBS and manage my symptoms with low fodmap diet which helps but does nothing for the pain. I feel like I’ve tried everything.
Nothing helps these episodes and it is so horrible to have to live with - has anyone ever experienced anything similar? I am so at a loss, I think if the lap comes back clear I will be devastated, I felt a touch of relief when I was diagnosed with PO but then they took it away ! Would love some insight or if anyone else understands my pain haha it truly sucks.
Thankyou and sorry for the essay xxx
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Flicque
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Sorry I’ve got nothing helpful to say as I haven’t experienced anything like that myself but only that sending gentle hugs and all the very best for your lap. I’m 29 next month with stage 4 endo, adenomyosis, Interstitial Cystitis, ME and Fibro so if you ever want to chat or rant I’m on Instagram and my name is Kitty Pert (kitty_pert) xxx
This sounds exactly like the way mine used to play out in pretty much every way that you described. I am so sorry that you are going through this. I also had these episodes and would end up chained to the bathroom, sometimes fainting, with vomiting and diarrhoea and the most excruciating pain that no painkiller could touch. The whole thing would last a couple of hours and then I would be left with severe fatigue, moderate but manageable pain and nausea for a further good few days. I had a laparoscopy (excision surgery) in Feb this year with a specialist, and had endo removed from my ureter and ovaries along with an endometrioma. I also had a Mirena Coil fitted. Since then I still get pain and upset stomachs but have not vomited since the operation. My symptoms have definitely improved over the last 4 months. I hope this gives you hope! The only thing I used to find that made a slight difference, was that if I was very strict on the “endo diet” and avoided most inflammatory foods for a good 10 days or more before the period, sometimes this would very slightly lessen the vomiting episodes. I really wish you healing, less pain and luck for your procedure and please feel free to message me if you feel like chatting.
Thank you so much, honestly it feels like I’m the only one in the world who experiences this exact type of episode so it’s good to know I’m not alone and that you have found some relief from your lap and excision surgery! Fingers crossed they can do something for me too. I will look into the endo diet - I have found that drinking alcohol can make things worse so I assume thats not included in the endo diet!! Thanks again appreciate your response a lot x x
I’m interested in how you’ve found the mirena coil, I refuse it because I’ve heard bad things across the board from anyone that’s had it. When did you get it fitted and have you had any problems? X
Your symptoms sound a lot worse than mine, you have my sympathy. I also was told my ovaries looked a little PO, but apparently that's normal for women who've been on the pill for a while (I don't know if that applies to you or not, but it was the explanation I was given!)
That’s interesting, I was on the pill from 15-22 and then I decided to stay off it for good. It was awful on my mood, they keep trying to get me back on it but I can’t risk the depression! Fingers crossed for the lap , it’s confusing isn’t it! Thanks for your reply xxx
Wow the pain episodes you describe are identical to mine! I haven't yet been diagnosed but oh I sympathise with you Hun I wouldn't wish these pains on anyone! I had one episode so bad I was sweating then shivering then my pain was making me scream out the closest thing to me was the shower so I got in fully clothed and sat with the hot water running on my back to soothe what I could, I have to wait out the symptoms till I can fully breathe again and go to try and nap as I'm absolutely exhausted after! Good luck with your lap I'm trying to get one too, I hope all goes well just know you are not alone xxxxx
Aw babe that sounds horrific how long do yours usually last? And what brings them on? Is it just your period or does sex sometimes do it? it's so unbearable isnt it, it's like you're trapped. I start making labour noises lol It's awful. I just sweat so much its so gross, it's mad what your body will do to cope with pain. Fingers crossed for you babe, you have to be so firm with doctors because they will always try to fob you off with contraceptives, and it takes ages for them to believe you that it's that bad. The first time I went to the doctors she goes "well I'm not worried about it" I was like oh cool thats good for you hun! Lolllll Good luck and let me know if you want to chat my insta is @flicque xxxxx
It depends really, sometimes it lasts an hour sometimes it's all day building up, mines usually when I'm due on, and occasionally when I'm actually on, yeah it's been ten years of being fobbed off but I think I'm finally being listened to! Thanks Hun xxx
I am so sorry for what you going through .I share with you the same suffering, and all your words and descriptions are reflection of my situation. I am 38 years old ،and the beginning of . suffering since puberty when I was 14. I really desperate and can’t take this anymore.
I hope you get the right medical help to overcome these pains and wish you good health.
I’m so sorry you have to go through this too I hope you are able to get a diagnosis and the right help too. It’s a long time to suffer and it’s a shame we are let down in this way, wishing you all the luck and love ❤️
Unfortunately I’m already been diagnosed with severe endometriosis 😭. They did not recommend me the operation because it could affect fertility, especially ,I have no children yet.
I have rectal vaginal stage 4 endo and I get this in the week leading up to my period. Like severe Ibs on top of the normal endo daily pain 😳 feels like I’m going to pass out x
I have no answers as to why it happens apart from if you have endo and it’s attached to the bowel it can effect in this way. Bowel is a sensitive beast doesn’t like being messed with 😳
I’m waiting radical surgery to remove the endo in the hopes of trying for a baby, but waiting times are ridiculous at the moment, looking at September at the earliest at the moment 😳
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I’m
good to know I’m not alone 
how long do yours usually last? And what brings them on? Is it just your period or does sex sometimes do it? it's so unbearable isnt it, it's like you're trapped. I start making labour noises lol It's awful. I just sweat so much its so gross, it's mad what your body will do to cope with pain. Fingers crossed for you babe, you have to be so firm with doctors because they will always try to fob you off with contraceptives, and it takes ages for them to believe you that it's that bad. The first time I went to the doctors she goes "well I'm not worried about it" I was like oh cool thats good for you hun! Lolllll Good luck and let me know if you want to chat my insta is @flicque xxxxx
Lower back & abdominal pain
Unexplained pain - endo?
Hi first time I have been on this site and seems like il be understood.Does anyone else feel like your being made to feel it's in your head?
Anyone else experience no improvement with decapeptyl?
