Advice about referral and the right thing to say

[Jeromekjerome]

I really need advice on what to ask my GP for to get my issue solved.

I have had lower abdominal pain and discomfort for about 2 and a half years. February 2020 I went to my doctor about it.

I described: fatigue, bloating, period cramps when it wasn't my period, painful ovaries, periods every 22 days, lower abdominal discomfort and pain as well as middle and upper, hip pain, intense internal pain near tail bone that woke me from sleep, underwear and waistbands causing constant discomfort etc. Family history of ovarian cysts and stomach cancer. I gave birth in 2006 with forceps, full spinal and an episiotomy.

I got a vaginal and lower abdominal ultrasound - performed very quickly (rushed?) with little communication from the nurse, it came back clear of any abnormalities.

I was prescribed the mini pill for 6 months, this caused weight gain and breast enlargement (very much unwanted!) so I stopped but it did help the discomfort lower down.

This revealed that the upper discomfort was perhaps a separate issue.

I spent 30 days avoiding all gluten and additives, no difference.

I was given a stool sample that revealed I had an infection of the bacteria h.Pylori and was given the standard eradication antibiotics, 1 month later, stool sample was clear and the upper abdominal pain began to go.

This still left the lower pain. I finally got a referral and appointment with a gynaecologist who was a complete dud - she was shaking her head and saying 'no' as I was talking, did not listen to what I had to say, denied that an MRI might help or that the ultrasound might miss something. She had only bad things to say about a laparoscopy She suggested going back on the pill or being fitted with the Mirena Coil, or taking paracetamol!!! -just pain management, not about finding the cause.

I want my GP to refer me to a specialist not someone who wants to fob me off but I don't know how to do this. The lockdown has really delayed all of this obviously.

Any advice very much appreciated. I live in North West England

[Moon_maiden]

Politely tell your GP you need a referral to a gynae that knows about Endo. Maybe look them up first. I say tell, as if you ask these days they squirm out of it.Not sure if you’ve had MRI, if not, tell GP you’d like one of those to cover pelvic and stomach/abdomen area. You need to keep an eye on things given family history.

I went private and one reason I could choose and I didn’t need a referral, so could start from scratch. They can, if they want, add to their NHS list for any treatment.

[Jeromekjerome in reply to Moon_maiden]

Thank you. I haven't had an MRI but feel like that may reveal whatever the ultrasound missed. I will try and find out who specialises in endo and get back to the GP.

[GrittyReads in reply to Jeromekjerome]

See my reply to someone else - above!! I saw a gynae privately, just for a decent assessment, and he then referred me for NHS treatment. In my case the coil worked! But you are right to be wary, as although the pill or a coil can slow/stop/even reverse the build-up of some endo tissue - and even make some that is already there, go-away - if you have endo in really dodgy areas (such as on the bowel) then it does need surgical removal by a specialised 'Endo-team' (BSGE docs, see the 'Endo UK site - links to right and above, for more info on this). Plus, I think your GP can refer you to a BSGE team - tho there may be a long wait, and they usually deal with referrals that have come from initial laparoscopies, where difficult endo tissues has been spotted. The specialist you saw sounds pants: Ultrasounds do not show most endo! except a few kinds, in certain places ... as the wonderful ultrasound specialist, who I saw, explained to me as she was doing her magic!! Good luck. NB a mirena worked for me, but it does depend on what type of endo tissue, and where!

[Tillyfloss]

Hi. It’s so frustrating when you aren’t taken seriously. If you are in the position to, look up private endo specialists ( we are blessed in the north west with a few to choose from) and have an initial appointment ( was £200 in 2017) We did this and it was amazing he knew exactly what I was talking about and when I described the pain in my hips he just said yes that’s classic endo - I really could have cried after being told time and again I was wasting peoples time. He then put me onto his nhs list as my mri showed the cyst was in a tricky spot and he wouldn’t do it privately he wanted to be in the nhs hospital with a full back up team ( very wise with hindsight but that’s another story 🙃). To get this I asked my go for a referral letter which they happily did as I’m sure she just wanted to get rid of me. Good luck. Xx