Feeling unsure

[northernsoul96]

Hello!

So I am new to this site, and forum, so hoping I'm doing this right!

I have had painful periods since I started in my early teens, but they have got worse as the years have gone on. When I was at high school, I could still go in and do my lessons, although I'd feel sore and under the weather. Now I am bed bound for 2-3 days, crying out in pain most of the night and then wiped out for the next few days due to exhaustion. I first went to a GP about my pain when I was 16, and again when i was 17 and again when I was 19. All three occasions, I was basically told my pain was normal, to get on with it, and if I really wanted something, the pill was the only option. I kept turning that option down, just because I've always felt unsure about using the pill, but also because I always felt like it was something more. My friends never talked about their periods being like mine. This year, after talking to a friend who had been diagnosed with endo, and who gave valuable advice on how to get some progression in investigating my period, I went back to my GP to once again discuss my period pain. I'd also started getting regular spotting between periods and random stabbing pains in my pelvis that at times would literally wind me, and send me to the floor. I was given the same response of the pill being my only option but I put my foot down and said I wanted more. She said if I really wanted, I could have a scan. It felt weird that the decision was put on. Y shoulders - like she didn't recommend the scan, but was like well if you want something, you can have this. Anyway, went for the scan, they found a thickened womb, and a polyp. I had the polyp removed, and they took a biopsy. Results came back fine, but the two periods I had since the polyp removal had been the worst ones of my live. If had made me really sad and I hopeful of ever being free of this pain. At my last referral, I asked about endo and the possibility of a laparoscopy, and got the same response as my GP appt. 'Well I don't know if they'll find anything but if that's what you want, I'll put you on the waiting list'. I'm now feeling unsure. I wanted her to actively recommend the laparoscopy, and now I feel like it was solely my decision. Is it worth it? What benefits have people had from having it? Did getting the diagnosis of endo help even if there wasn't much they could do?

[Fabbird]

Hi, that GP sounds very unsympathetic. Have you tried seeing someone else? GPs vary a lot in their awareness of endo.

Can you tell us what kind of scan you have already had? Was that ultrasound?

From what you say, it does sound like it would be good to have a diagnostic lap. I found it really helpful to know for sure it was endo. You can then consider your treatment options. You will need to start seriously considering hormone treatments. Either the mini pill or the Mirena are generally the first treatments for endo. You may well find that the gynae who does your lap suggests that they insert the Mirena if they find endo. So I'd suggest reading up on it before you go for your appointment.

Although it's a lot to take in, having the Mirena immediately can be a good thing. At least you are out when they do it (it can be painful to have it put in). And it's the lowest dose hormone treatment you can take.

[GrittyReads]

Hi, I second what Fabbird says about getting a different opinion, and I would see if there is another GP in your practice who is more sympathetic. I would also talk to the trained advisors at 'Endo Uk' - link to their website at the top of the page, to get email and phone contact details. Also try to find out if there is a local 'Endo UK' Support Group near to you: there is one in Devon, near to where I live: so if we far-flung, isolated bods have one, I'm sure there's a better chance for most other women in the UK.

Ultrasounds are not brilliant for seeing Endo, unless a 'transvaginal probe' (in the vagina) can spot it on the ovaries and nearby ligaments. I would ask to see a copy of the report from the Ultrasound (it's your right) as if anything like this was mentioned, the GP should refer you for a diagnostic lap. A laparoscopy is the only way to absolutely diagnose Endo, although even then, many general hospital gynaecologist can miss it, as they are not Endo Specialists, and may miss certain types of Endo, in hard-to-access places. If serious Endo is noted, there is a strict protocol in operation, which GPs are supposed to follow: to refer you to a BSGE Centre = Specialist Endo Clinics - as ordinary gynaes are not supposed to tackle the worst endo.

However, if you have just a diagnostic laparoscopy, and it shows some Endo but nothing too awful (the amount of pain and bleeding etc with Endo, often has no relation to how bad it is: my Gynae was amazed that I was still walking ... while other women are in agony from tiny amounts in just the worse place, but that can be safely removed. However, it may be that the pill, or a mirena coil will be the best option for you, and the experts tend to opt for these with women who have not yet had children, as they are less invasive than removal of Endo tissue, which over time can cause scarring and hinder conception. Of course if they don't suit you, a lap to remove the Endo may be a later step.

I think/hope I've got all my facts right, but I really would have a chat with the 'Endo Uk' people. Also: read around on here a lot; look for a local group; and read all you can - we have to become our own best experts. There's a UK Facebook page too, as well as US and Canadian Groups that post the latest news on Endo findings.

Hope this helps, take care.