Endometriosis UK

Struggling so much and don't know where to turn

Hi. I'm still battling to get a diagnosis as to what's wrong. But all literature that I've read myself suggests endometriosis... My previous doctor agreed with me as well. I saw one gynae after fighting for a referral. Who just told me to stop taking the pill and have a coil fitted which I refused. Mainly because I've read a lot of women suffer more with a coil than without. I've had two ultrasounds and a transvaginal scan...all of which have showed nothing (I've since been informed my weight could have masked results). I've finly for a referral to a new gynae and am.booked in for a hysteroscopy in a few weeks. Recently...I've found my symptoms have worsened dramatically. Last month I was bed bound when I had my period. Despite a lot of pain relief...I could not move without feeling like I was going to pass out. My partner and I just don't have sex anymore because of the pain it causes me. Each month...I suffer horrible IBS the week before my period...my back is agony...stomach cramps leave me bent in half in pain...I bleed so heavily (and pretty sure its not just coming from my vagina) and pass large clots frequently. This month...the pain hasn't stopped when the bleeding stopped. I am still in so much pain. My doctor has advised me to go to a&e when the pain is at its worst...to see.if they'll give me morphine.

I don't know what to do anymore. I am in so much pain and just want to cry all the time. My partner tries to support me but it's hard when I can't even bear hugs when the pains bad. I've got no family near me or any other support. Has anyone any advice on anything that might help.

7 Replies

Hi there, I am so sorry to hear that you in so much pain and I have been through the same. The only thing that helped me is try and take my mind of it and warmth, when I was at my worst. But unfortunately there is nothing else until they remove it, if they find something. I am pleased to hear that your partner is looking after you as that support is the biggest and strongest and just need to try and stay positive and don't fall in the big black hole, if the pain is really bad do go to a&e and get morphine as this will at least help you sleep. If not take ibuprofen as it will reduce the swelling inside and should if not take away the pain at least reduce it. Again I am sorry I can't be of more help but hope you will feel better soon and if you have any other questions please let me know.


I'm taking cocodamol 30/500 and ibuprofen 600mg every day, and the ibuprofen changes to mefanamic.acid and tranexamix.acid when I'm.bleeding. hence been told to go to a&e. Just feel so....low now.


I know how tuff your finding it, but you will feel better (at some point) , try and think positively (don't let this bugger disease win). Do go to a&e, or call the ambulance if it really gets bad. I would certainly invest in a tens machine. Keep going back to the drs ask them for stronger pain relief. Hope you feel better soon x


What does a tens machine feel like?


Doesn't hurt , unless you turn it up to high to quickly, it pulsates and you can turn it up to how you like it, you put two to four pads on the pained area. I wouldn't be without mine. I like,e those microwave heat bags to. Look on amazon x


Sorry to hear of your pain. With regards to the pain levels, i have been exactly like you for years. i think the pill may be the cause of some of your trouble. have you researched any of the side effects of the pill? i opted out of the marina coil also and so glad i did. i fought for a laperoscopy and my hunch was correct (dispite what several doctors would have had me believe) after 15 years of long suffering, a diagnosis was found - endometriosis!

please take heart. your pain will not last forever. you are not alone!

i take a drug called pregabalin (lyrica), it has worked wonders for my horrific endometriosis pain, it was recently suggested by my pain management consultant (the drug itself is usually for epilepsy, but in recent years has been prescribed for lots of conditions including anti anxiety and pain relief)

also diet is important. try to avoid alcohol, sugary foods, and coffee. try to drink loads of water. it does help a little.


I use a "chillow pillow", "4head" cooling stick for my head, and "biofreeze" cooling spray for my shoulders, hips, tummy, back etc. They really help bring my temperature down.

natural herbs like camomile and ginger. camomile capsules to relax and calm my mood and help me sleep, and ginger capsules are excellent to alleviate head ache, and upset tummy, nausia, diarrhoea, and i.b.s..

The above items can be purchased on ebay and amazon.


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