Scared, Frustrated and Confused - Is it Endo?

[Joe3132]

I was hoping someone on here can give me some much needed advice as I am getting nowhere with my own GP or the NHS.

I have been having spells of severe lower abdominal pain since January and was actually admitted into hospital at the end of January as I passed out due to the pain being so severe.   It started just after my period had finished ( I am on the contraceptive pill and would have a medium - light flow with a bit of cramping and back pain but nothing too severe) and this pain started off like a stabbing pain and got gradually worse with intervals of stabbing and dull aches on both sides and right round to my back.  When I was admitted to hospital I couldn't even let the doctors come near me as the pain was so severe until they had me doped up on painkillers.   They suspected kidney stones (I had my appendix out when I was 10) and a ct scan followed which picked up no abnormalities apart from a small amount of abnormal fluid and mild constipation (I tended to disagree with the on this one as I am probably a bit constipated most of the time and it has never caused pain like this).   They said that the fluid could have indicated a burst ovarian cyst but it was hard to tell and supplied me with laxatives and paracetamol and sent me on my way as they needed the bed.  They said I would be called in a few weeks for a pelvic ultrasound just to keep an eye on my reproductive organs and make sure there were no smaller cysts.  I was in a lot of pain for the next few days but felt the pain gradually ease with every new day (probably took about 3 weeks total for the pain to completely disappear) and when my period was due the following month it didn't appear apart from a small amount of brown discharge for one day( doctor told me not to worry, was probably due to stress with everything I had been through) and when I went for the ultrasound they said that everything looked nice and healthy.

I was delighted when I was back to full health at the end of February and happy for once to see my period return also.   This again was normal medium - light flow with mild cramping.   Day after my period finishes I once again feel a familiar twinge in my stomach and the whole process starts again (only this ti,e it is coupled with chronic thrush which takes me 8 weeks to get rid of and  shooting/pulling pains in both legs).  When the pain peeks after about a week and a half I am bed ridden with a hot water bottle crying myself to sleep and after the peak it starts to ease off again until it disappears after another week and a half.   My GP prescribes me naproxen ( which helps but tends to make me constipated - which I had completely sorted out since my ct scan), refers me urgently to a gynaecologist and tells me to back my pill up to stop my period until my gynaecologist appointment as the pain seems to be in connection with my cycle.   This was around 6 - 8 weeks ago and I did as she said.  

All seemed well and then last Saturday night I felt the small twinge return and the pain gradually got worse again.   The pains shooting down my leg are so bad this time and i can feel the shooting down to my bum cheeks too.   the pain is also more concentrated on my left hand side now but can radiate to the middle and right also.   the stomach pain is once again stabbing/ dull ache in my lower pelvis and i sometimes feel as though my groin is actually sleeping and something is about to pop on my lower left hand side.   The NHS gynaecologist waiting list is so long that my partner and I paid to see one privately for a consultation this week and she examined me and gave me a pelvic ultrasound.   She once again said that everything looked completely normal and the only gyne thing it could be would be endometriosis but since I don't have heavy painful periods or painful sex it didn't sound like it could be as these are the most common symptoms.   She also said that endo pain wouldn't resurface so sharply if my periods had stopped ( I have been backing my pill up for about 6 weeks on my GP's instruction to try and control the pain).   However, she said the only way to tell for sure was to have a laparoscopy but she said she really didn't think it was endo.

I did come off the pill for about three months last year just to see how I would respond to it ( I had been on the pill since I was 17 without a break and I was 30 then and am now 31) and my period came the month after I had stopped, was a little heavier but not much and the cramping was a little worse but nothing I couldn't deal with.   I did suffer from ovulation pain though and it lasted for about a week.

Instead of feeling better after speaking to the gynaecologist I am now just totally scared and confused! I know that it isn't anything else as I have been tested for everything and this God awful pain is coming from somewhere!   Can anyone suffering from endometriosis or a medical practitioner advise me of the following:

- Is it possible to have endo pain and not have painful or heavy periods and experience the pain when not connected to your period?
- does anyone know how to get onto the NHS waiting list for a laparoscopy and how long it is?
- can anyone advise on pain medication as I am now taking the naproxen with paracetamol but it isn't doing much

Symptoms I have experienced are as follows:

- severe lower abdominal pain
- sore lower back
- shooting pains down my legs
- light spotting after relations
- chronic thrush
- nausea
- extreme fatigue (I am sleeping 8 - 10 hrs a night and am still exhausted the next day)

Any other advice would be greatly appreciated. I am getting married in 8 months and I don't want this pain to destroy what should be the happiest day of my life or spend our honeymoon bedridden and doubled over in pain!

[Biscuitfeatures]

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!

[ticked]

Did you have the surgery yet?

[Joe3132]

Hi There,

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.

[ticked]

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.

[ticked]

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

[evewisewoman]

Hi Joe3132,

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 :)

[Joe3132]

Hi JD,

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!

[jdbabybump]

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

[Joe3132]

Hi There,

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?

[ticked]

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

[Joe3132]

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.

[evewisewoman]

Hi Joe3132,

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 :)