In a lot of pain and it comes in waves

This is my first post. I really need some advice as I don't know what to do. I had an appointment with a gynaecologist at my local hospital as I keep getting waves of pain and nothing was making it better. The gynaecologist says that everything seems to point to endometriosis......that was one year ago. I was supposed to have a follow-up appointment in Jan but it changed to Feb. Then it was changed to march and then may. Not even 3 days later it was changed to July. I phoned up the hospital as my pains are becoming more frequent. I was told that my doctor is on maternity leave and all the other clinics are getting cancelled. So pretty much my health is put on hold. Its starting to affect my college (not good as I am going into hnc) and the pain is starting to go round my back as well as my gut. I am in tears right now as I am in limbo. My gp just wants to give me irritable bowel tablets which made me feel worse before. Can anyone tell me how I can calm down this pain when it kicks into high gear? Thank you for any help xxx

19 Replies

  • Hi

    Im really sorry to hear ur in so much pain and that your follow up is taking so long! Here are a few things that may help the pain a hot water bottle or a wheat bag ( my wheat bag is my best friend), a tens machine, a hot bath. Some people say the endo diet also helps symptoms but i am yet to try this. I hope you manage to find some relief from your symptoms and keep pushing for your follow up.

    Annie x

  • I wonder if you can complain as you have clearly not been seen within 18 weeks? Or be referred to a different consultant?

  • I plan to phone on monday to see if they can do anything else for me. The last woman from the hospital told me that I should see my gp if I can't wait for appointment at hospital. I did the very next day and it was a complete waste of time. I told my gp how much pain I was in and what was happening with the hospital and in a nice way she asked what I wanted her to do. She was trying to help but at the same time I also felt she wasn't listening. The pain has eased for now but I still don't feel 100%.

  • As Annie said hot water bottle or wheat pad the are brill, I also buy heat pads from local home bargains store the one in orange box it has a Velcro belt for holding them in place and you can use two pads at one time I Angel so back and stomach get heat all day I get bout 8-9 hours out of them at 99p there ace. Not sure what pain relief you on currently I take co codomal diclofenic and gabapentin though this week having no relief, back to back no break contraception is meant to be good for preventing more pain though personal the one they gave me didn't work, hot baths with radox muscle stress realise salts also ok, I have two bottles and re fill them throughout the day. Complain big time my oh printed a few pages off endo help site and I filled it out and took to my gp as one of the doc I got was not great, if you getting no where with your doc is there another at practise you could see maybe help and listen more

    Take care and hope you get something to help X

  • At the moment I have not been taking any official pain relief as no doc has told me too. But I take paracetamol if the pain gets really bad, doesn't do much. Gonna try getting those heat pads and a wheat bag. So thank you xxx to everyone who suggested them. I've had very little luck with contraception unfortunately but I am on the combined pill which I take constantly. Gonna look up the websites you spoke of too. I'm from glasgow so I will do a search for specialist in my area, hopefully I can find someone, i'll also phone the hospital again.

  • Have you had any luck with doctor, hospital or finding a specialist in your area? X

  • I received a letter today saying my appointment is now in june....not great but def better than july. Nearest specialist is in Edinburgh. Unfortunately I don't drive so it wouldn't be that easy for me to go there. I'll keep looking though incase anything is available nearer.

  • I think there is a list of all bgcse available consultants will have a look see if can find it Hun as sure One in Glasgow xx

  • That would be awesome thank you xxx

  • Thank you so much. I did a quick search but no joy for glasgow. I will have a full look on the site tomorrow as I have been feeling awful today with extreme dizzynes that wouldn't go away. I have started to write a diary (advice from my mum) with details of every time I feel pain or feel horrible. I feel it could be good to show the doctor when I finally see them. Thank you again xxx

  • Shame hope you are feeling less awful and dizzy today. Hate that dizzy feeling it's horrid. That's a good idea the diary I got booklet that I printed from endo uk website it had checker and list of symptoms that was able to check and a info leaflet for doc as some doc know nothing about endo. No problem shame Glasgow not on the list good luck xxxx

  • hi. I'm so sorry your being messed about so much that's appalling. The lovely ladies have mentioned most of the pain relief I use, all I would add is yoga often helps with the back and hip pain for me and deep breathing can help with niggles. The Endo diet has helped me alot with reducing pain as I was a sceptical about it!

    as your gp asked what she could do go armed with the details of your nearest bsge centre and ask for a referral to the centre, worth a try and you have been waiting a long time.

    good luck with it and don't be fobbed off get on their backs. Xx

  • My gp phoned yesterday and told me she phoned the hospital on my behalf and still no joy. Still on a waiting list for cancellations (face palm) also the test she did for my heartburn (bad heartburn for a week straight) came back clear as I knew it would. I now have my mum telling me to drink pro biotic drinks. @ Tillyfloss thank you. I will keep shouting till I get seen but I looked up my nearest bsge centre but the only one that is near me is Edinburgh and its not really that close at all. I don't drive unfortunately so I struggle to get anywhere lol. I am still going to consider it though as time is getting on. Thank you for the advice.

  • Are you on any pain medication I have bad indigestion with the diclofenic and take two omperozole every day xxxx

  • I've not been put on any pain relief by my doctor. I took ibuprofen the other day as the pain was so bad, it seemed to help after a while thankfully. My doctor just insists on giving me ibs tablets. I refuse to take them.

  • Tiger balm is also good must say to be carful of wearing white clothes when using tiger balm as can stain clothing it's almost like a deep heat though more intense and good for deep muscle pains X

  • I got a letter from the hospital and my appointment has been moved to a slightly earlier date in june which is fine but still not as early as I was hoping.....i'll take what I can get though. I'm have yet another night of intense pain which came out of nowhere. I've taken the advice above and tried taking some ibuprofen hoping it kicks in soon. X. The pain feels as though my insides were being squeezed in a vice. (Sorry its the only way I know how to describe it) gonna try and get a hot water bottle or wheat bag tomorrow.

  • my pain was so bad tonight i almost phoned nhs 24. its no longer coming in waves, the pain is constant and it goes round my back aswell as my pelvic area. i took ibuprofen and a heat pad but nothing worked. i'm terrified now that because the pain is getting worse and lasting longer that my possible endometriosis is getting worse. I sorry i needed to vent as i struggle to talk to anyone about this. i am in a house with my fiance and 2, 6 year old boys who are all sweet but none of them really understand how bad i feel and how down i am. also it doesn't help that my anxiety is going through the roof right now. I think i just needed to vent :-( I am done waiting. I will phone on Monday to see if my appointment can be transfered to a different hospital.

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