Should I see a Dr?

[Pinkhusky]

Hi all,

Newbie here, I’ve just joined. I’m after a bit of advice please

I had a small lump on my belly button for 18 months / 2 years which got quite painful so I went to see a Dr. She referred me to Dermatology but while waiting for this appt the lump popped then refilled. After seeing the dermatologist (who suggested I have it removed) it popped and refilled several times. After having it removed it was sent for a biopsy and I’ve received a letter this morning to say it shows features of endometriosis. The letter is very dismissive and just says no further treatment is required but if there is any recurrence then to see my GP again.

After a google this afternoon (as I have no idea about endometriosis) I have seen that I do have some slight symptoms - period pain and pain during / after sex, I have clots and blood in my urine during my period - but not to the extent of what I have read. The pain makes me want to stay curled up on the sofa all day but I still manage to go out if I need to (but I do have a reasonably high pain threshold)

I’m just looking for some advice on whether anyone thinks it’s worth seeing a Dr? I’m worried that there may be more lumps / cysts inside that aren’t visible? I also have a 2 year old son who I’d like a sibling for and I’m worried about fertility. I suffered an early miscarriage a year ago and tried to become pregnant for a few months afterwards without success.

Any thoughts / advice is appreciated, even if it’s to say you think I have nothing to worry about

Thanks all

[Harley9]

I would definitely seek the opinion of an endometriosis expert. Unfortunately the world of endometriosis is a difficult one to navigate, so you’ll find a lot of patient led education on this forum and Facebook groups. The most important thing to learn quickly is that gynaecologists are not automatically experts in endometriosis and you can get a lot of misinformation and dismissive responses.

I highly recommend finding an endometriosis expert consultant, who practices in a BSGE centre.

If you’re in the U.K., you can raise this with your GP but be quite firm in wishing to have the NHS referral to a BSGE centre with an expert. I was referred to a few gynaecologists before learning the hard way (six years down the line...). It may also be worth checking if you have any sort of private insurance that could cover it - I have a BUPA policy through my work which covered my referral and surgery with the consultant I wished to see.

If there was evidence of endometrial tissue within the biopsy, it sounds to me like a diagnosis of endometriosis as that tissue shouldn’t have been growing there? In which case you could be right that there is more underlying.

When you find the right consultant to discuss this with, don’t be afraid to bring up fertility. Very often, they are linked and the consultant will do their best to explain the possible implications and to preserve fertility.

Good luck - the best thing to do is to read some posts and join some groups such as Nancy’s Nook and EndoRevisted on Facebook to educate yourself so that you can be firm and knowledgeable at your GP appointments. 🙂

[Pinkhusky in reply to Harley9]

Thank you. This is very helpful. I’ve joined those Facebook groups and will do some research into local gynaes to see if I can find a good one who might be able to help.

[Felma]

Umbilicus or the belly button is a very common site for endometriotic nodules. You might talk to your doctir whether a few months of hormonal suppression of the endometriosis will be justified