Hello, in severe pain need some help and support

Hello everyone,

I am currently pre diagnosis endometriosis but doctors are sure that is what's causing my pain. I've always had painful periods, with strong PMS, bloating and diarrhea (sorry if that's TMI) around my periods. This got worse as I got older. My GP initially pescribed mefenamic and tranexamic acid which helped a little but did little for my irregular cycle, I was still needing time off school with pain. After going back to my GP he put me on microgynon, this seemed to work for a while till about a year and a half ago when I was admitted to hospital with an endometriosis flare up due to the uncontrollable pain. Since then I am have been admitted back into hospital for pain control numerous times and am finding I am also getting mid cycle pain as well as period pain and day to day pain which isn't as bad. On my most recent admission the gyn doctor said she wasn't going to do a laproscopy as my ultrasound scan was clear and thought it was a waste of a time. She also said my symptoms will go away when I get pregnant and till then to take Cezarette back to back for 6 months. I've just finished my first packet of Cezarette, had a bit of irregular bleeding, but am now in severe pain and have been for the past 5 days. I've been taking 2 X 50mg tramadol, 2 X 500mg paracetamol, 35/100 codeine every 4 hours as well as 3 X 500mg mefenamic acid daily. Still finding the pain quite severe. Was wondering if anyone had any advice about what to do next or how to deal with the pain? Really struggling with the pain atm and feeling very frustrated that I become this burden to those around me. Finding it quite difficult to come to terms with the fact that at 19 I may be facing this pain for the rest of my life, don't know how you ladies do it. Thank you in advance xxxx

10 Replies

  • Ummm..... from what I understand, the only "gold standard" test for endometriosis, is to have a lap. The ultrasounds will not show any endo unless it is absolutely humongous of spots in there. The ultrasounds will show cysts as well, but not endo spots. And if I were you, I wouldn't let her be my surgeon because being so sure of herself that it's not; she won't be looking properly for it. And they ALWAYS say get pregnant, the endo will go away. Again, that is false. How many mom's out there were pregnant and in pain from it? How many moms NOW have to suffer with this horrid disease AND have to look after an active toddler? The answer.........way too many. You need the surgery to check and verify what you know you have.

  • Thanks for taking the time to reply, much appreciated! I went back to my GP who gave me an emergency referral to a consultant in a specialist endo centre. I just saw her today and I'm booked in for a diagnostic laproscopy in early May so will hopefully know more then!

  • The not very experienced in endo gynaecologists advise to get pregnant - as their speciality is fertility and obstetrics, however an experienced endo surgeon would encourage you to have any endo removed asap.

    I would advise you are far better off have surgery sooner than later - before it compromises your fertility.

    Being pregnant will pause the endo - but after that you still have active endo in the body and baby to raise 24/7 and it will be harder much harder to cope when you are also battling endo pain.

    I would go back to the gynae - you have done what they asked and been fobbed off for long enough, now is the time to have a lap op and get that existing endo located and removed. Best done when you are on a period and the endo is active - or just after a period, so if you get an op date, painful as it will be sack the BC Pills and have a period or two as per painful normal. It makes the endo so much easier to locate ...and be got rid of.

    After the op you can take steps to reduce or stop your periods till you are ready for trying to have a baby. This has the added benefit of reducing the likelyhood of new endo emerging.

    You may not have that much endo to remove, the less endo the wore the pain is, as a general rule, but either way removing it is of paramount importance. And take someone with you for moral support so you are not fobbed off again with yet more meds. They are masking the underlying problem not resolving it at all.

    Very Best of Luck - and stick to your guns. You have done what they asked and it didn't help and now it's time they did what you ask and give you a diagnostic lap op at the very least, so you know the extent of the problem inside and hopefully they can remove all the endo lesions if there isn't much there and it isn't deep growing endo.

  • Thank you for your reply and for the advice, much appreciated. I saw a gyno doctor who specialises in endo today at a specialist endo centre and she was very helpful. So different than the last gyno I saw! It was actually a relief to see someone who took what I was saying seriously and didn't try to fob me off. She booked me in for a diagnostic laproscopy in early May without me having to push for it and will see where to go depending on the results of the lap. Just glad to be taking this step! Thank you again for your advice and support.

  • You need a new referral to an endo specialist centre (do a google as there might be one near you). Your gyn Dr doesn't know what she is on about - sorry to sound rude but it really annoys me when this happens! As Aardvarklips has said, the only way to diagnose is to have a laparoscopy and as she also quite rightly says, you want to be treated by someone who has experience of this disease and how to manage it afterwards. If you have an opportunity I would go privately, even if just for an initial a consultation. That's how I did mine, I found a private consultant online who specialises in gynae and bladder problems and booked myself an appointment as my symptoms sounded like a cancer and I had no knowledge of endo. I took a list of 4 years worth of symptoms and tried to remember every contact with a Dr I had in regards to my symptoms. From that consultation alone she pre-diagnosed endo, interstitial cystitis and a couple of other things but thankfully not cancer! She then transferred me back into the NHS for my surgery - I didn't realise that she even worked for the NHS let alone she could do this as I was willing to pay for the treatment as it had got so bad. The initial consultation isn't cheap, I think mine was around £190, but it was SO worth it and I would advise you to seriously consider it. The peace of mind I had from someone taking me seriously was the best thing ever as I had started to believe it was all in my head as Drs and well meaning family members thought I was "over egging" it.

    I know how you feel, I am 23 and am so overwhelmed some days by my conditions however, it is a lot easier to deal with when you actually know what you have so be strong and don't put up with excuses from the Drs. You need a diagnosis asap!

    I hope you get some help soon!


  • Thanks for taking the time to reply, much appreciated! I was considering private, but I saw my GP at the end of last week. She gave me an emergency referral to a specialist endo centre. Due to a cancellation I was able to be seen today and the specialist was very helpful and understanding, which was quite a relief! It felt wonderful to finally see someone who understood. She booked me in for a diagnostic lap in early May, so hopefully will know more then. Thank you for your support xxx

  • That's brilliant! Best of luck! :) xx

  • Good grief - you've been given some bad advice by that gynae. In your shoes I'd do as the other ladies have recommended above and see a different gynae and get another opinion. I didn't feel happy with the gynae I saw last year even though he did just offer up a lap straight away. He just wouldn't listen about other issues and kept quoting stats at me and ignored my family's medical history. I didn't get a chance to ask any questions before being hustled out the door. So when I asked to be referred to a gynae again (for a different reason) I asked to go somewhere else - I just said I didn't really click with the last one and my GP didn't make any fuss about it. Neither should they! I was really lucky in inadvertently getting a very good gynae this time. Someone I saw privately 10 years ago who is highly respected and has specialised in painful periods and pelvic floor repair (the first one I saw specialised in fertility). When I saw it was this consultant from before I couldn't have been happier! However, I think I should have done some research rather than trust to luck. If you need to travel a bit to see someone better it is definitely worth while. Good luck.

  • Thank you for taking the time to reply. As you might be able to see from the comments above I've had some success today with a different gynae doctor at a specialist endo centre. She was very helpful and understanding, she actually took what I was saying seriously which was such a relief after seeing some other doctors who believe its exaggerated pain. She wasn't very happy with the other advice I'd been given about endo going away with pregnancy! The specialist has referred me for a diagnostic lap in early May, so fingers crossed I will know more then. Thanks for your advice!

  • Hey. I hope you got some answers. Getting pregnant does not help with endo at all. Drs everywhere advise it but it's bull. I even had an ovarian cyst bleef when I was pregnant which scared the crap out of me as there was blood. And even though I breast fed for 5 months I still got my stupid period back after 6 weeks. Hopefully I'm one of the unlucky few in that regard! On the plus size I got a beautiful little son out of it so it makes the pain of it worthwhile. Just wish it wasn't every month! Diet really impacts me too. Caffeine and dairy and wheat especially. Good luck XxX

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