I just finished reading your very lengthy post. Unfortunately, you've got me
stumped as to what you are experiencing. What is an NHS waiting list?
What do the letters NHS stand for? One suggestion I have for you is to
perhaps google endometriosis and see what comes up. You said you've
been on the pill since you were 17. I myself was on the pill for a relatively
long time to regulate my periods. However, no doubt you are aware that
some side effects of the pill can be quite concerning. You know the little
pamphlet that comes with the pill pack. I would advise reading it carefully.
I stopped taking the pill because of some of the more dangerous side
effects associated with the pill and my first husband and I used a different
form of birth control. I refused to take the pill anymore for these reasons.
I also took naproxen for a number of years to control painful periods.
Good luck finding some answers. Eve :)
Hi evewisewoman, thanks for your reply.
Sorry, i am from the uk and we get free health care on the NHS ( national health service) but because it is free the waiting list is VERY long for any kind of procedure. To pay for a laparoscopy privately is thousands of pounds and I just don't have that sort of money. I have looked into endometriosis at length and while I do experience a number of the symptoms they are just not during my period and this is what has me confused - could it be endometriosis if I am experiencing the pain at other times during the month?
I agree with your comment about the pill - I have been on it for a very long time and think it would do no harm to come off it to get all of the false hormones out of my system and see if that would help in any way.
I am sorry that you are going through all of this. It sounds a little like me if you read my journals.
One thing it could be is endometriosis you don't have to have all of that for that to be Endo as everyone is different
Another thing it could be is scar tissue from your surgery for your appendix.
My suggestions since I suffered undiagnosed for 17 yrs is to find an endometriosis specialist or an oncologist gyno If you can't find one and have a lap done. The only way to diagnose is through a lap and you want someone who knows what they are looking for
Thank you so much for your reply.
I never thought about scar tissue causing pain. Could it still be the appendix scar tissue even if the pain is more concentrated on my other side?
Thanks for your advice about the laparoscopy, I am really going to push to get one done ASAP. The problem with my doctors is that they don't think I have endometriosis and keep dismissing it because the pain is not happening during my period. I am so confused as my symptoms match so many that have been described but just not during my period. In your experience would you agree with my gynaecologist, that if my periods have been stopped due to continuously taking the pill that the symptoms should not so abruptly be reappearing as I have stopped my cycle?
Hi Joe best bet isto find an endo specialist I could give u details of mine but I'm from Wales, not sure where ur at. U can have 1 or more symptom so don't listen to ur nurse, sounds like she's fobbing u off as they're not giving u other suggestions. I was 15 in pain gaeny told me its in my head, I pushed for answers and at 19 I was diagnosed with stage 3 endo and told is. Need IVF to conceive. I'm now 25 and caught naturally. Just shows u should go with ur instinct as professional as the nhs are they don't know ur pain. I can pass on details WWW.endometriosis.org.UK I'm currently undergoing training to help others affected so if u want more info feel free to ask. Just another note... nhs do a laprascopy and depending on ur area I waited 6 months to be diagnosed, I then had to wait another.5 months to be treated. My symptoms were worse 1 yr later so I found Mr penketh, Wales endo specialist team. I paid £100 consultation fee and he transfered me onto their nhs waiting list. It Toke 9 months but their op was diagnosis and treatment, my left ovary, bowel and stomach had adhesions and attached to one another. This can be the result of previous ops. This may. be the case with u after ur appendix was removed x
Thank you so much for your reply.
I am from Northern Ireland so across the pond.Would you recommend looking on the net for an endo specialist or should I go onto the website you recommended? I would be more than happy to pay a consultation fee to see a specialist in order to get referred. This pain is actually taking over my whole life and has got me really, really depressed. I have spoken to a few doctors (finally found one that is sympathetic but I think she just doesn't know what to do with me anymore as she has tried basically everything and nothing has worked) and a couple of them have made me feel like I am making all of this up and that the pain is constipation, anxiety or in my head. I'm a healthy young women (cant e member the last time I was sick, had never had a day off from work and the only time I was ever at the doctor was to get my pill and the only time I have ever been in hospital was to get my appendix out) and I know my own body and this does not feel right or normal. It's also really freaking me out as I want to start a family next year so would hate to have any problems with my fertility!
Thank you for replying to my comments and telling me what NHS stands for. I live in Canada, specifically in Ontario. Here we have OHIP, but only
for residents of Ontario. I wish you the very best. I've read some of the
posts other Medhelp members have sent you. They offer very good advice.
Hopefully, things will get better soon for you. Take care. Eve :)
Where in Ireland do you live? I can ask some Endosisters on Twitter to see if they can recommend a surgeon for you. Let me know
It really could be anything that is causing the pain. My pain wasnt always when I had my period it was sporadic. My bowels were the most effected and that was where most of my symptoms came from however it was all over the place the because of my surgery when I was 7 for the appendectomy and intusseption I had massive scar tissue.
And to set your mind at ease some women do not have Endo pain that is why this disease is so different for everyone.
Push your doctors to do it or get another doctor. That is my advice.
I am from Belfast in Northern Ireland. I took your advice and phoned my GP yesterday morning and said that I was insisting on a laparoscopy and she got in touch with the Gynaecologist I saw last week who contacted me today to say that she has added me to her NHS waiting list for a lap which is currently a 21 week wait so at least I am getting somewhere!
I have to say, if it hadn't been for the advice from the girls on here I would probably have just plodded along taking painkillers for another few weeks and hoping for the best, thank you so much for the help and advice.
Did you have the surgery yet?
Omg! This is my story exactly! I've just been released from hospital a second time, having been told that my pain should go away in a couple of weeks - but they have no idea what's causing it!
I've been on the pill 5 years now. That had made all my periods regular of course (previously completely random), made them very light, and I'd noticed that the period pain I used to get had pretty much gone away. But lat cycle I had crazy PMS symptoms and then a couple days before my period was due, the pain started. Just a twinge in my hip at first, then it became so severe in my lower abdomen and through my hip joint that I couldn't walk. The pain settled a bit with morphine and Endone but 13 days later is still there, with nausea that prevents me from eating, pain in lower abdomen, through my lower back, and down my leg, and a constant need to sleep. A full feeling near the pain that comes and goes.
All my tests came back negative and I've been left frustrated and uncertain of if and when I'll get better :(
Please post if you've got an answer yet!