New to the endo forum. My story...

[_Tamsin_]

Hi everyone. I found this forum last night, I have been desperate to talk to others who are going through the same thing as me! I am 20. I have always had heavy, painful periods, but my main problems started around June 2013, with right-sided ovary pain, which was mild at first. It got worse, so in September I went to my doctor at uni who referred me to an ultrasound scan. At the time, the pain was bad but nowhere near as bad as it is now. It seemed to get worse and worse every week! Ibuprofen and paracetemol were no longer enough to ease the pain. It spread to my other ovary and all over my womb. Two months had passed and I still hadn't received a letter about my scan. One night, I was in so much agony I could barely move and I was dizzy and nauseous. My boyfriend took me to A&E, where I didn't get any answers, but they gave me codeine which I have been taking ever since, alongside paracetemol and ibuprofen. I am in pain everyday. I only have about 5 days a month where the pain eases, and I don't need to take codeine.

I finally had my scan in November. Whilst waiting to hear from the results from my GP, I was in starbucks with my friends and ended up in so much pain that I couldn't move again. I have never been in so much pain, it was unbearable. My friend's got a taxi with me to A&E again. The doctor I spoke to was so empathic and kind, but there wasn't much she could do. She told me to go back to my GP and ask for a referral for a gynecologist. She looked at my ultrasound results and said that it is likely that I have polycystic ovarian syndrome, (which my Mum has). She also told me it is very likely that I have Endometriosis (my Grandmother had it, and so does my Aunt).

I found another GP, who happened to have a special interest in gynecology. He took my symptoms very seriously, did an internal examination (which was painful) and told me that he thinks I have endometriosis on my ovaries and womb, and possibly elsewhere in my pelvis, as I also get lower back pain and pain when going to toilet. I had a blood test to test for PCOS, which luckily was ruled out. This GP was very good, although he was reluctant to refer me for a gynecologist because he said it would waste my time. Instead, he wants to start treatment now, and if that doesn't work refer me to a specialist. I am on the contraceptive patch, and he has told me to put three months together without a break so I don't get a period. He is hoping that keeping my hormones at a stable level might shrink the endo. If this 3 month trial helps, he will try something that gets rid of my periods which will hopefully reduce my symptoms.

Thank you for taking the time to read this! It is all quite new to me. I still have so many questions. I am pleased my doctor is taking it very seriously and trying to treat me straight away, but at the same time I feel like I should see a specialist because my symptoms are so severe. Sex is also often very painful, which I have found quite upsetting. I miss being able to have pain-free sex! And I often feel guilty when I can't have sex or have to stop because of the pain, even though my boyfriend is so caring and supportive. Sometimes the pain gets unbearable and I feel like I can't cope with it! It often makes me feel dissociated, dizzy and nauseous. Even when I take paracetemol, ibuprofen and codeine I am still in pain. I can imagine what labour feels like now! Does anyone have any pain management techniques they recommend?

[Impatient]

I a sorry but your GP may be thinking he can do it all with just fobbing you of by putting you on back to back pills.. Yes that will help - but it is no where near enough.

You must insist on getting on the waiting list for a referal to see an ENDO specialist gynaecologist to discuss this and get booked in for a laparoscopy to map out the locations of the endo and get as much of it removed as possible and with luck get that done before the spread on any endo compromises your fertility. Endo can grow anywhere - what you want to avoid is it growing on or near the ovaries and fallopian tubes and while stopping periods does reduce the risk of that gettig worse, but it certainly will not stop any endo that is already growing there, and should be surgically removed if it is deep growing, or lasered back if it is still shallow.

So on the one hand you GP has done the right thing by getting you to manage your periods -and certainly worth considering the mirena coil which gives a much longer term stopping periods solution - without the faff of remembering to take tablets.

But equally there is no substitute for a proper diagnosis to see what the current state of endo is inside you and to be aware of any organs currently under threat. It may be appendix, bladder bowel, ovaries , tubes, colon, lungs, diaphragm and on and on.

If you do have endo it can grow anywhere and some locations require highly specialised surgery to be removed. So the quicker you find out what the state of affairs is the better you can be directed to the right people to help you.

The lengthy waiting lists are a problem so the sooner you get on that treadmill the better. Next time you see your GP, try to be as firm as possible and insist on a referal to a gynaecologist. preferably one with significant experience in treating endo surgically.

I would hate for you to end up as so many of us have ended up - fobbed off for far too long and no longer able to have a family - if that is something in your future planning.

[_Tamsin_ in reply to Impatient]

Thank you impatient, being able to have children is really important to me, I am such a maternal person and always have been. The thought of infertility is horrible! I really appreciate the advice. I didn't realise how important it was for me to see a specialist. I am going to insist on getting a referral, and if this doctor still doesn't refer me I will go to a different doctor.

[Cooka in reply to _Tamsin_]

I agree with Impatient. Although your GP has good intentions, it's sounds like you do really need to see a specialist since you are in so much severe pain. Back to back pills may not be the answer to your pain. x