In my head I have been quietly thinking ‘it’s probably Endo’, and my very supportive mum has been thinking the same. But what if it isn’t? What could cause such bad period pains? Is it possible nothing’s wrong with me?
I’m on the pill now and after a lot of trial and error and persevering I have found one that works for me. I don’t have any periods because I take them without a break but before I did my pain was horrendous every month. I was in agony: unable to move or sit up for at least a day and unable to work for 2-3 days every time I had a period. Sometimes I would literally fall to the floor because I couldn’t stand with the pain. Paracetamol and ibuprofen didn’t help at all.
I was referred to a gynae over 2 years ago, but I never felt listened to. I brought my mum to an appointment so she could help back me up and that got me referred for an MRI, but as that was clear and I’m on a pill that finally works (although it didn’t at the time), the gynae discharged me after a 2 minute phone call.
That was about a year ago. And because the pill is working I haven’t been making a fuss, but I’m going to have to take it forever and I would actually like to know if there’s something wrong. I can’t ever take a break from the pill, if I forget to take it for a day I get period pains back (not as bad as a real period, but still debilitating and I struggle to stand or go into work).
I feel like I’ve been fobbed off a bit because I’m not good at speaking up for myself and unfortunately my mum has moved away so I can’t bring her to any more appointments with me - not that I actually have any more appointments! She’s the one who gets people to do things. I’m 25, so I know I shouldn’t rely on her, but doctors don’t listen to me.
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CatMum11
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There is nothing wrong with bringing your mom with you. Do you have a good friend who can go with you ? Maybe you can get an appointment with a gynaecologist who specializes in endometriosis. My daughter has been suffering as well with all the endometriosis symptoms but it has not been found. She is waiting to see a gynaecologist who specializes in endometriosis. The pill did not help her at all. I’m glad you are getting some help with it. Keep pushing to find out what is wrong.
Can you describe your pain when not taking the pill - do/did you get lower back and/or leg pain, any bowel problems, pain with sex if appropriate at any time of the month?
Before I was taking the pill at all my periods were unbearable. For 2-3 days I can barely stand up or move at all. I get severe cramping in my tummy/ pelvis (sorry I’m not sure how to explain it) and stabbing/ cramping pains, all the way up to the bottom of my ribs and always in my lower back. The pain also goes down into my groin and upper legs. One of the first pains I usually got was my back passage cramps making me feel like I need a poo constantly, but I don’t and if I try to go it hurts more afterwards. Every time I have a period I get a mixture of constipation and diarrhoea as well that lasts about a week.
I get a lot of these pains/ poo issues again in the middle of my cycle. My mum told me it’s ovulation pain. It usually only lasts a day or less then and it usually starts on one side of my body, but the pain’s just as bad as having a full period. I don’t get pain with sex though.
I don’t know if that’s a very good description of what it’s like. Doctors don’t seem that bothered when I tell them what it’s like, so I don’t know if I’m explaining it correctly or well enough, because it really is agony.
Please, do not guess. Go back to your doctor. Don't give up. My diagnosis took years. There is a tendency to pass "women's problems" off. Go back again and ask why you haven't had your referral back after two years. .And don't be scared of the doctor. They may expect deference but you are employing them to care for you. Write down the points you want to make and make them. Write the replies down and don't be afraid to question.
I know why I haven’t had a referral back: I haven’t asked for one, I’m too scared I’ll just be told I’m wrong again. They gave me a phone follow up appointment with a registrar after my MRI and because it was clear and I’m no good at speaking up for myself they discharged me back to my GP. I don’t even know if it’s worth asking for another referral, it doesn’t matter how much pain I’m in now, I just think it must be normal and that nothing’s wrong with me. Maybe I just have a low pain threshold or if I’m making a fuss.
Oh! Poor love. I totally understand that fear. I was brushed off with all sorts of excuses for years. I don't know where you live but if you can change your doctor. Not every doctor has the same attitude. It is worth going back. If you don't no one knows you are still troubled. Low pain threshold is piffle. If you have pain, you have pain. You have every right to be treated. Doctors are human. They have all the fears we have when they are not in a white coat so you don't need to be afraid of them. You don't have to make a fuss. You just have to ask for what you deserve. If you have been waiting for a check and you haven't had it, it could be your record has been lost. Hospital record offices are notoriously busy places and loses are inevitable sometimes. . Don't give up. You are as valuable and equal with any of us. I learned much later than I should have done that you go to your doctor with a professional manner and talk to them and mean it. I wish I could give you the confidence you need. I can't but I can cheer on the side lines for you. Remember, you deserve good treatment just like everyone else. Confidence is nothing to do with it. It is your right.
Thank you. I plucked up the courage and I went to a different GP. She was surprisingly helpful and is going to refer me back to the gynaecologist. Now I just have to wait a few months for an appointment, but l guess that’s still progress.
Thank you, those are some great suggestions. I’m going to print off the forms and some pain maps so I have all the information ready for when I have my appointment.
My mum says thanks too, she thinks it’s a great idea!
How have you been getting on this last few weeks? I just wanted to let you know that i spent from the age of 10/11 (when my periods started) in and out of hospital. By age 21 (3 years after my eldest son was born) I was finding myself taking painkillers regularly and outside of my period. It took until 2 weeks ago to be diagnosed, I'm 30 almost 31. Every single scan has been totally "normal" and ive been misdiagnosed with a whole range of conditions, even lupus. My only abnormal thing was autoimmune cells in my blood, which indicate some kind of autoimmune condition (of which there are hundreds, maybe thousands). During 2020 when covid hit I was at my lowest, scans were clear and I felt like I was genuinely insane. Because I have PTSD and depression I really started to believe that it was in my head, or that my trauma caused my pain. It wasn't until I took a close look at my cycle that I noticed the link. Please don't stop trying to be diagnosed, a clear scan doesn't mean endo isn't hiding. Xxx
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