Endo pain and what to do next?

[CourtneyLeigh3]

So I’ve been waiting for my appointment with a gynaecologist for around 4/5 months, I had my appointment last week. My appointment lasted around 10 minutes and to be honest I was disappointed. The gynaecologist said she felt she did not have to examine me as id been put back on the pill, which is what she would recommend for my problem. I’ve now got to wait a couple of months for a letter to come through to do a scan, she said unless something shows on the scan she wouldn’t put me through for surgery, even though she said that sometimes you can’t pick everything up on a scan? Since I’ve been back on the pill (Rigevidon- around 2/3 months) I haven’t really had any severe pain up until the last 3 days. My gynaecologist told me I need to take a break, whereas when I started the pill the nurse told me I didn’t have to take a break. Last night the pain was horrendous, I was left in a ball crying my eyes out, I take naproxen 500mg when the pain is really bad and also Econcac suppositories. I’ve had to cancel my shift at my work tonight (I work nights as a healthcare assistant) and was told that I should probably cancel my shifts for the week and I’d have a sick note and that I shouldn’t be lifting heavy equipment/people. I argued against this and said that I would be fine for tomorrow as I have been managing fine over the last few months. Can anyone give me any suggestions as to why I’m now feeling this horrendous pains after a couple of months and what I should do if nothing comes up on the scan? Should I just stick with the pill or argue for surgery?

[Mussya]

Sorry about the pain, sounds like such a frustrating experience :(.

I would try to get to an endo specialist as GPs and gynaecologists don’t seem to know what do with endo.

It means we have to educate ourselves and be assertive with them to direct our treatment the right way.

I’m on this journey myself and what I’ve learned so far is that the pill and other hormonal treatment not always helps the symptoms, and doesn’t treat the problem itself. I refused it (have a blood clotting problem as an excuse so may have been easier for me), and am now trying to find a way to get referred to an endo centre.

Good luck!

[CourtneyLeigh3 in reply to Mussya]

Hi there, thank you for your reply. I feel that may be the next step, I will have to starts googling and see what I can find, I have been on the pill for 3 months now and I’ve had serious pain over the last couple of days and no painkiller is touching it, I’ve also had a lot of brown substance down below which I get before/after periods so I’m guessing old blood but no actual period?

[Giraffe92]

I'm sorry to hear you are feeling so lousy I would try to get a second opinion. I had a scan for pcos twice and only the second time did anything show because it can depend on where in your cycle you are, so I wouldn't be happy to have everything hanging on scan results- the scan didn't show my endo at all. And the nurse doing my scan admitted that cysts on my ovary were unlikely to be causing the pain I am in.

Being totally honest though even after my scans, when I got my gp appointment they said they suspected endo but that they couldn't do anything about it, so I ended up going privately to an endo specialist. I really hope that getting a second opinion will help, it seems that not many people know what to do with endo even though it is so common!

[CourtneyLeigh3 in reply to Giraffe92]

I looked into private healthcare it was just so expensive! Maybe I can just look at paying for a one off appointment instead of a monthly insurance? Exactly it’s not very helpful when there’s a high chance that the scan may not show what’s there as it did with you. It will probably be months before I have my scan and it’s effecting my work again too, I’ve been fine on the pill since I started a couple of months ago but now all the symptoms are back!

[Disneynala]

Definitely get a second opinion. I had a scan in December I had chocolate cysts and kissing ovaries which is at least stage 3 endometriosis I’ suffer with pelvic pain mainly. My first gyno said it’s fine and put me on the pill even said fertility won’t be an issue or anything. I have recently paid to see a consultant who specialist in endo paid £180 to see him and he said I need surgery to remove it all as there is less then 10% chance of conceiving and told my the back of my womb is joined to my bowel. I’m now referred to him through the nhs to have surgery so it’s a waiting game for surgery now.

[CourtneyLeigh3]

Wow! It’s lucky that you did get a second opinion, that’s exactly what my gynaecologist told me too? At the time I wasn’t in pain as I’m on the pill, but it seems all my symptoms are now back! That’s not too bad of a price for a consultation and I take it that because you’ve been referred to him through the NHS for surgery that is all free isn’t it? Can I ask where you went to see him? I’m not really sure whether to start with looking privately

[Disneynala in reply to CourtneyLeigh3]

I had enough of being in pain and my gp wasn’t listening and didn’t really want me to be referred so I looked up private gynaecologist and found mine he specialist in endometriosis pelvic pain and advanced laparoscopic surgery so I paid to see him. He told me I can have the surgery o the nhs he wrote to my go asking him to refer me back to him on the nhs so now I’m just waiting now. The gynaecologist told me to go on the pill back to back till he saw me again as the pill should help pain but it’s not atm

[CourtneyLeigh3 in reply to Disneynala]

Thank you for your reply, so did you only have one consultation before surgery was mentioned through nhs? The pill has stopped working for me too but it’s another couple of months until I have my scan

[Disneynala in reply to CourtneyLeigh3]

Surgery was mentioned when I was first diagnosed in December. But the gynaecologist told me if I had surgery chances are she might have to remove both my ovaries and it frightened me as I haven’t any children yet and being hit with having endo was bad enough. So I went away to try be on the pill again which I was on for 7 years and she then dismissed me. But my symptoms have got worst and I have lots of new symptoms. Whilst when I saw a specialist privately he said surgery is the only way to be pain free and to be able to conceive as the cysts are in the way. He just seemed to know and I felt he was confident in what he was doing. So he wrote to me and my gp asking to refer me back to his nhs clinic for the surgery. I was only refereed last week so it’s still a waiting game. So that’s why he told me to go back on the pill back to back. Sorry if you have had 2 replies from me I wasn't sure if the first one sent. X