Hi everyone thanks I advance for reading. I suffer from painful periods. As a teenager, they made me vomit. In the last 7 years the pain had become unbearable and debilitating. It is an overwhelming stabbing/burning pain before during and just after my period in my left side, which radiates across my body. I have repeatedly been to the dr, but rarely get the same one. They have given me stronger pain medication which didn’t work, 2 ultrasounds which showed nothing, the combined pill which gave me migraines and now I’m on the progesterone only pill. The dr who prescribed that said she couldn’t refer me to a gynaecologist until I’d had 6 months on the pill. So I’m at the end of the 6 months now. It has helped to a degree, less of a stabbing pain, more of a strong ache, so that’s good, but I bleed 2 weeks out of the 4 and my mood is very low. I feel despair and the joy is missing. Could that be the pill? Anyway I went back to the drs (but got someone different) and she would not refer me to a gynaecologist. She said next step is to try the mireno coil - and that all of this is probably perimenopause. I’m 45 so yes is could, but my periods have been unbearably painful for years now.
I’m sat here in pain, on day 11 of bleeding, feeling just so low, run down by years of pain or worrying about pain
I guess I’m asking, do you think my symptoms warrant a referral to gynaecology or should I just get the coil and suck it up?
Thank you. I appreciate any advice you can give.
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Firstly, I'm so sorry for what you're going through and send lots of love and sympathies, your pain and worries are both valid and you should feel validated in your appointments
You're absolutely within your right to seek answers, if you feel a gynaecology referral is something you need or even would like just to voice your concerns to someone else then absolutely fight for that!
It sounds like you've been going through a lot pain wise, and while the pill can cause lower moods, the pain itself may be getting you down too (I only say this because over the past few months I've been really low and feel that it's because I'm so frustrated and lost with the daily pains)
It took me about 6 years to finally get to gynaecology, I kept rejecting their offers for going on the coil, it's all fine and well suppressing the symptoms but I think they forget that we honestly just want answers! (I'm just about on year 8 of seeking diagnosis for context)
Call them and call them and annoy them like mad until they refer you, it's their job to care for you but they can be so dismissive until you find the right person. Don't let them fob you off for premenopausal symptoms when you've felt this way for years, you know your body and if something feels wrong or like it needs explored then 100% go for it x
Thank you. I’m so grateful that you have taken the time to reply to me and sorry to hear that you have had 8 years of seeking a diagnosis. I really appreciate your words and I think I will have to get more persistent with the drs. Time to get strong! Good luck in your journey too. Thank you again very much x
Oh my gosh 1000 percent go back and tell them , don’t ask , that you want a gynae referral. Ask then to explain what is wrong with you , when they say then don’t know that’s the moment you tell them no they don’t know and that’s why you want a gynae referral. No one can force you to try the coil, I flat out refused it as I don’t want hormonal birth control ,just don’t want it. 42 so of a similar age to you . Good luck
I’m so sorry to hear about your pain and how you feel. How you feel is because of the pain you’ve had for many years. Clinically, it’s true it could be because you are peri menopausal but that doesn’t mean you shouldn’t see a gynaecologist. There are gynaecologists who are experts in menopause. The British menopause society also has more information about this. So I would suggest pushing your GP to give you a Gynaecology referral. I hope things improve for you, and take care of yourself!
Yes you definitely need to be reffered to a gynae. If I were in your position I would search online for a gynae who specailises in endo and who does private cases, otherwise they might refer you to a gynae who doesn't know much about it (lots of gynaes specialise more in obstetrics for example). I would then ring the gynaes secretary and explain that you want an appointment and that your GP is not being helpful, they might see you without a GP referee at all and if you are seeing them privately you can also go back to the GP and insist. Say you have every right to be refffered to a specialist it is private and not costing the NHS anything. They will refer you and you won't have to wiat long. It will probably cost quite a lot, about 200 pounds but it will get the ball rolling, you can get a diagnosis within weeks and you don't have to stay private, you can get the op done on the NHS but it will really speed things up.
Alternatively go back to the doctor, you can see which ever doctor you prefer, whoever has been the most sympathetic but you need to insist you see that particular doctor and you might have to wait an extra week or something and then insist to that doctor that you need to be reffered to a gynae asap in accordance with the NICE guidelines for endo treatment.They will refer you if you make a big fuss and are really assertive but then you will probably have to wait 6 months for the referrel and it might be to a gynae who isn't specialist. TRy to look for a BSGE centre for endo they are meant to be more specialist.
I had to go to my NHS doctor and say " look I know it's endo I have all the symptoms, it's hereitary and my sister has it you need to refer me" I must have been fobbed off 20 or 30times before that. Then I got reffered to a non specialist gynae and they did a rubbish operation and I had to go back and get another op done privately. I don't know why GPs exist sometimes it feels like they are there just to stop people who need a referral being refered. My current GP is great but now I always just try to get to see a specialist directly. Once you have had a referel to a specialist you can go back to them directly if you have further problems. I'm sorry you have had all this grief to put up with our medical system in this country does not work.
Thank you so much, all this advice is invaluable. I do feel fobbed off and that I’m making a fuss. I really appreciate the info about the different gynaes too. I will definitely have to get assertive now! Just so worn down with it but this forum has given me a boost. I hope you are doing ok now you have found a route through it all.
Everyone has the right to a second opinion so ask for one. Maybe try seeing the family planning GP every practice should have one and mine has been particularly good but getting an appointment with her is extremely difficult.
I really suffer on hormones (pills, coil, injections, etc I have tried them all) especially with weight, low mood and anxiety the family planning GP told me it could be a progesterone intolerance.
Like you, when I’m on hormones it dulls the pain somewhat but the bleeding is constantly off and on and it drives me nuts!
I’m now waiting on a gynaecologist appointment (was taken off the list again🤬!) so needed to be referred for a hysterectomy as I’ve now exhausted all alternatives but at 35 now wanted to delay surgery as long as possible so used the last 5 years trying everything else!
Thank you so so much for taking the time to reply and I’m sorry to hear of all you are going through. I hope your appointment is soon and you get some help. I’m going to get some guts and be assertive! Thank you again.
I really understand how you are feeling, I'm going through a very similar situation and have been living in pain for a long time now. I have been having very heavy and painful periods since they pretty much started and they have got worse over the last few years. I've been prescribed tranexamic acid to reduce the bleeding, as I've become anaemic due to blood loss. Additionally in the last few years I've started experiencing strong sharp, shooting pain in my right side under the rib which also radiates to my back. It feels strongest during my period and for about a week afterwards, however the last month it's been pretty much constant.
I've had ultrasound scan to check my liver etc which showed nothing. Recently I've been prescribed progesterone only pill to see if that helps to reduce pain and heaviness of my periods but it's to early to say yet... In the meantime I was referred to gynaecologist who said to continue on the mini pill, done another ultrasound (again nothing came up) and the next step might be MRI scan, as she suspects it could be endometriosis.
If I were you I would strongly insist on referral to gynaecologist, with the problems you're having they cannot refuse, be persistent. However, be prepared it might still take another few months from referral to actually seeing one. Wish you very best of luck.
The very best of luck to you too. I’m so sorry to read about your suffering. I hope the progesterone only pill is helpful to you. Time for me to be persistent, as you say. Thank you again x
I am so sorry that you are having such a bad experience with your GP only adding to what is a terrible time. My story was similar (same age when approaching GP) and I felt forced into having a mirena, which I finally agreed to and that caused me no end of problems/side effects and did not help the pain. I then had to fight after that to get to see a consultant. It's a long story, but the crux of it and my advice to you is, you know your body, you have a right to be heard. Don't ask for an appointment with a consultant TELL them. My words to them would be "I WANT an appointment and EXPECT my concerns to be treated seriously. I DO NOT want a mirena coil". Honestly sometimes this is the only thing that works. I've been fobbed off with Kidney Stones and IBS as they refused to listen but I was right all along my pain and heavy periods were due to endometriosis. I really hope you get this sorted, just the fact your voice isn't heard can get you down, not taking into account the continued pain you are in. I hear you, thousands of women hear you, you are not alone. Sending you hugs and positive thoughts for the answers you deserve xxx
Thank you for these words. Much appreciate you taking the time to reply. This community is so wonderful. I must admit that the thought of the coil doesn’t sit easy with me, I didn’t really want to take the pill but I thought it was a means to an end. Time to get assertive! I’m sorry you had such a fight to get your diagnosis - but sadly not surprised. Thank you again x
I absolutely feel you have a right to be seen by gynaecology and if you haven’t already please seek advice from endometriosis UK. The coil may help you as it has been much better for me then the progesterone only pill but I totally understand you want to know more about what’s happening in your body. I hope you get the answers you need xx
Thank you for taking the time to reply. I will read up about the coil but yes I think I need to get assertive and get some answers. I’m glad the coil has helped you. Thank you again x
I’m so sorry to hear the pain and suffering you are going through! Ridiculous how long you have had to tolerate that. If we had pain in any other part of our body and bleeding they wouldn’t be giving boxes of tablets to persevere with for six months before being referred to a specialist but unfortunately I hear of so many woman having to go through lengthy periods of time until they reach a proper diagnosis.
I understand they try to manage things first without doing anything drastic but six months on a pill with little relief isn’t good enough and you don’t deserve that ( I have a bee in my bonnet as you can tell as been through the same thing 🤣)
My advise would be to be assertive but calm with the doctor or gynae when you see them and stress that you want to know what the issue is before preceding with the mirena or any further medical management. I’m sore the gynae will examine you anyway, and you might be very lucky and have an understanding one 💕
It’s hard ti even hold down jobs and look after children when this is going in and the impact it will have on you mentally will not be helping. I have a large uterine fibroid and tried all sorts of medical management over the years and none really helped and I’ve had to really push to get it resolved. I was very lucky to meet a fantastic gyn and surgeon and the op is three weeks tomorrow.
My advice is don’t play anything down and explain the sheer pain and constant bleeding is impacting your life is every aspect ie mental health, work, relationships etc as I’m sore it will be - you wouldn’t be in here if it wasn’t 💕
Message if u ever need a chat and good luck at your app xxx
Thank you so much for taking the time to reply. I’m so glad you found a good gynae and I hope your op goes well. It’s definitely having an impact on my life as you say, I just feel so worn down by it all. But it’s time to get assertive! Thank you again and all the very best for the next stage of it all for you x
Definitely go for a gynae referral. I can't see in what you've written that they've at least sent you for an ultrasound scan? You need to check everything's ok for your own well being and it will be better to get help from those who specialize in gynae. I would tell the GP that your pain has become unbearable and that you are very concerned. I have rejected the mirena coil myself. I haven't been able to get my head around it and the thought makes me squirm. One thing to mention just in case, is that I used to think my pain meds didn't do anything, only to finally discover that I'd been taking them the wrong way. I used to wait until I was in pain before taking them. I learned from a friend who is a health professional that for them to work I needed to start taking them at the very first murmur of pain (like a tiny twinge) for them to work or if I could, start taking them a day before. It's to do with the way that painkillers block the pathway to the brain. Anyway, that might well be obvious to you, but I thought to mention it. I'm now early 50's and have also suffered a lot of pain since my teens. I finally got put on an orodispersible version of Tramadol a number of years ago which has been more helpful than anything else. The orodispersible tablet has helped me not throw up the meds I'm taking. I also use a tens machine which I recommend. I hope you have more help from the next GP you meet. Only other thing to suggest is if you are that ill, then go to A&E. I spent years in agony, but eventually it got so bad I would feel like I was passing out and I found A&E very helpful. I should mention though, that when I went to A&E I got taken by family and would need a wheelchair to get me in I was so bad... or at times had to get an ambulance it was so extreme. I hope you get some answers and help soon. This stuff is so difficult to deal with, but there is some help available. Hugs to you xx
Thank you so much for taking the time to reply and I’m so sorry to read about all you’ve been through. I had heard that about the pain relief and I did try to take them in advance, but sometimes (mostly) it comes on strongly with no warning and I’m too late. The stronger pain killers made me feel so sick and often made me retch or vomit. I’ll definitely be more assertive at my next appointment as I just can’t go on like this. I hope things continue to improve for you. Thank you again for your support x
Sorry to hear the pain comes on so suddenly. I have had times like that and very much sympathise with you. Have you tried any orodispersible meds at all? It's just that I used to throw up, but since having orodispersible medication I have found it happens much less often. Just a thought and I'm not sure it will work for you, but I think anything might be worth a go. I so hope you get the help you need and soon xx
Sorry to hear the troubles you've been through; I'm new here and have only really just been diagnosed, however, I've been fighting for about 10/11 years now just to get referred on the NHS (I'm 27 so they just kept telling me my pain was normal and i should just go on the pill) Istopped going to the drs as i started to think i was over-exaggeratting, even though i knew instinctively my body was telling me there was something wrong. It took 3 AnE visits in 2 weeks for me to get a referral; now I'm waiting for MRI scans and consultations.
It's definitely within your right to go back and keep demanding referrals.
If you can afford it pay to see a endometriosis specialist privately who also practices on NHS. They can refer you to there own NHS clinic. Look on Nancy's nook for your nearest specialist clinic.
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