I'm sorry this is so long - I'm really struggling with all this.
I have always had pain with my periods, I first went to the GP about it when I was 16 - less that a year after they first started, because my mum told me that the amount of pain I was in wasn't normal. I went on the mini-pill for a bit and when I came off it I didn't have a period for about 6 months: and that was great!
I'm 24 now. My periods have always been painful and irregular, until about 18 months ago when the pain started to get much worse not just around my period but also around ovulation, but my periods also started to become more regular. I went back to my GP who's been lovely. But I've tried everything she can prescribe: mefenamic acid, TXA, and the combined pill (which gave me three full periods in 3 weeks before I finally stopped taking it). None of it has helped. She's mentioned Endo was a possibility, so referred me to a gynaecologist, but the gyno couldn't have cared less. She told me to go back to my GP and decide if I wanted the pill or the coil, despite the fact my GP has indicated she's not willing to give me either because it's contraindicated by complex mental health. I told the gyno all this but by the end of the appointment was on the verge of tears so ended up agreeing with everything she said so I could leave. She's referred me for an ultrasound but told me it will just show that nothing's wrong.
You can't see any of my symptoms: I have issues with my digestive system around periods (increasingly as the pain has got worse), since moving in with friends 9 months ago they have been on the verge of taking me to A&E/ calling an ambulance 3 times because of the extent of my pain. Sometimes I can't move, I can't stand, even codeine doesn't take the pain away.
A friend of mine has recently been through the same process and, having initially been told to get the coil, has been referred for a lap after a second appointment with a different doctor. Maybe this should be reassuring, but her symptoms are very different to mine and there's actually stuff to see that her cycle isn't normal/ there's a what was suspected to be a functional cyst on one of her ovaries.
I'm worried that I'll just be dismissed again and expected to cope with this pain for the next 30 years. I'm worried that no one will ever believe how bad this pain is, and how dysfunctional the digestive issues make me (I just can't risk leaving the house sometimes). I'm worried that there is nothing wrong, that my GP was wrong to suggest endo and maybe I'm the problem. I can't stop thinking about it and it's making my mental health worse. I just don't know what to do. Any advice, similar experiences or words of advice would go a long way. x
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This made me so sad to read. It rings very true to the situation I was in too in my 20s and even now I am 32 the docs don't seem to listen fully and completely understand how being in pain constantly ruins your life. I would ask your GP to refer you to a different gyne! I had 3 due to moving house and all 3 had different opinions! Waiting again for my 4th referal. I even have damaged my skin from having hot water bottles constantly. Is there anyone who can go with you to your next appointment? Sounds ridiculous but I took my partner previously and he was able to be a little more assertive than I am and they seemed to take him more seriously than me.I take Tramadol which helps the pain but I know that has horrible side effects which might not suit your mental health.
Keep going though and dont give up. Pain is pain and defo don't let them make you think you're being silly xx
Thank you so much for replying. I feel like I've run out of people in my life who a) I can actually talk to about this, and b) who will listen and understand.
I tried to take someone with me last time, but they wouldn't even let them in the building because of Covid - I got out of the building after the appointment and sobbed in their arms for about 20 minutes before we left. When I called up to make my ultrasound appointment though I explained the anxiety/ stress etc. and it's on my notes now so hopefully next time they'll let both of us in! I get the feeling that they'll advocate for me better than I do for myself.
I feel like I can't ask for another referral until I've had the ultrasound though (which is in January) otherwise it looks like I haven't "tried". I hope your 4th referral goes better than your first 3! Until then I have to deal with the pain as best I can (I know what you mean about hot water bottles (I have one right now!) and it definitely isn't doing my skin any good!).
I'll have a look at the side effects of tramadol and maybe go back to my GP to see if they can offer anything different to what they've already tried.
Thank you for validating my experiences, it really helps to have someone take the time to let you know you aren't alone. xx
A scan might show up other things that could be causing your problems so It might not be endo the only way to tell properly is by lap but that's not normally done till most hormone treatments have been tried out.....which can take forever. Unfortunately you have to be really demanding and forceful with Dr's otherwise they just think you can cope as you are and we just haven't the energy to be like that most of the timeWrite a list of all your symptoms and how it effects you daily and take it to next consultation. You shouldn't be living your life like this
Thank you for your advice. I use a symptom tracker but hadn’t thought to write it down into an actual list with how it affects me!
I’m mostly just worried that they will find nothing and they’ll tell me nothing’s wrong. And maybe nothing is wrong! I think it’s the last thing that scares me most, because I can’t cope the way things are.
I’ve had years of being ignored/ mistreated by doctors for my mental health and whilst I’m used to it, I just want to be treated well by doctors for a change. Constantly fighting with them to get the bare minimum is exhausting!
I think we all wonder if our symptoms are real or if it's just in our heads especially when we don't understand what's going on with our own bodies it can be very frightening.you know how much pain your in so don't be fobbed off.
Some people don't always get a diagnosis from lap and then after 2nd opinions endo was found....they need to have some sort of training in spotting endo and not just basic gynae otherwise it can easily be missed.
I'm sorry to hear your mental health has suffered and you should never be "used to" being treated badly. Your currant GP sounds very understanding and helpful
I hope you have got enough support around you to help you get through this challenging time in your life.
Feel free to private message me if you ever need a chat
Thank you ever so much for your kind and helpful words. I have wonderful people around me but I don’t like to lean on them too much and they can’t quite understand what it is to go through this however much they care.
I may well take you up on that offer of private messaging you in the future
Yep, been there... I am in mild pain with a hot water bottle now as I type (getting much better.. will explain).
5 years later I remember sitting in the GPs surgery in tears demanding to be referred and the GP said my two colonoscopies, 2 ultrasounds and 1 MRI plus numerous bloods had showed nothing so it must be ‘Psychosematic’, in other words in my head.
I ended up saving up and going for a private MRI which finally showed up stage 4 endo and adenomyosis after 6 yrs if feeling like I was being ignored!
Dont give up and taking people with you is a brilliant idea, strength in numbers I think.
Since finding out I have changed my diet and started with a nutrionist who helped me work out I had severe Vitamin D deficiency which makes endo and pain harder to heal. I am on supplements now and my pain has changes significantly from crazy to manageable and often not at all.. better and better every month.
Read up on low inflammatory foods (organic meats and lots of veg for example) as this is good for pain in general whilst you wait for a diagnosis.
You have lots of friends here in the same boat so you wont feel alone xxxx
Gosh! What a journey, I’m so sorry it took so long. I’m glad things are getting better now, though. Actually a friend did recommend a book (Eat yourself healthy) as she has suspected Endo and says it has helped a surprising amount. I’m vegetarian so eat a fair amount of vegetables anyway but avoiding things like caffeine and processed sugar is something I’m going to make an effort to do (post Christmas!), especially around my period.
I also have severely low vitamin D - I’m on a loading dose at the moment, but I didn’t realise that could contribute to pain! I only found out because my GP did a blood test when I said I was constantly exhausted, although now I’m not sure if I’m constantly exhausted or if that’s related to my cycle too, because sometimes I feel fine.
I was so worried to post here as I don’t necessarily have Endo, but everyone’s messages have made me feel a lot better and so much less alone. I’m so grateful! X
Hi, do see a different GP and gynae, it’s so important to get this checked properly. I left it far too long and insides became a mess. Ultrasound never showed anything and even MRI didn’t really show what was there, scans aren’t totally reliable. None of them showed both ovaries.
The endo UK site has great info re consultations with GP and Gynae, also a symptom diary.
Regardless of whether it’s endo or something else you need to know and it’s not them suffering.
If you have a telephone appointment have someone with you on speaker phone so the doctor knows you have support.
Take care, you’ll get there 🙂, the forum is great for info
Thank you. I think I will push to see a different gynea after the ultrasound. I’m also meant to have a follow up telephone appointment the following day to discuss any results, although I’m meant to be at a funeral that day so probably not in a place where I can be on speaker phone 😬 that said, I’m not even sure if I’ll be allowed to travel for the funeral with new tier 4 in place :/
Hearing everyone else’s experiences is both reassuring and disheartening! You’ve all been through so much whilst I’m already struggling at the start of what could be a long and painful (literally) journey!
What you said about needing to know, whether it’s Endo or not, is so affirming. I think I’m at the point now (already!) where I just need to know and then I can figure out what to do. There’s only so much googling you can do before you run out of new websites and just need that definitive answer about your own body.
Sorry about your loss, was it someone close? I hope you do make it to the funeral. At least ultrasound can rule out other things.
Googling is ok at times, but this disease varies so much. It is important to know, I think GP’s may start to change attitudes soon over this, likely still have to push a bit 😂
You will get there and most on the forum have an experience likely to help 😀
My Gran, but she was 95 and ready to go, apparently. We shall see what happens with the funeral, but with most of my family in tier 4 now I’m not sure if it will have to be postponed. It doesn’t rain but it pours!
I’ve found that about variation, I read some people’s experiences and identify completely with their symptoms, then I read others and I can just about pull out one thing that’s the same/ similar. It’s so good to have the support of people here though, you understand in a way that doctors don’t (but maybe you’re right and that is hopefully starting to change!).
I was wondering if I could ask you about having a transvaginal ultrasound, or maybe I could private message you about it? I’m quite worried about it especially after my first gynea appointment, which was traumatic from start to finish, especially during the pelvic exam.
I have had issues all of my life. Heavey periods with clots. At: 22 after having my 2nd child my problems got worse. Had rectal bleeding with clots. At: 28 had a hysterectomy , as they could not let me pass another period due to the amount of pain I was in. I had severe endometriosis. But I still had rectal bleeding with clots, of which I still have at: 65. The lining of my bowel is very thin so they cannot operate on my bowel. Plus I have a rectal ulcer. I was lucky to have a good GP. I was sent to a Specialist bowel hospital at London, as no-one had ever dealt with a problem like mine. They did not know how to deal with me. If you need to message me you can do. regards, Della.
Wow- you’ve been through such a lot! I’m glad you managed to see what sound like the right people though, even if not everything has been solved as a result. So much of getting the right treatment seems to be about luck with getting clinicians who will actually listen and take you seriously.
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What do I do next. Nothing came up in my laparoscopy 
I'm feeling so overwhelmed, I don't know what to do now.
Worries that I shouldn't be worried about
How can I get the doctor's to take me seriously?
