Frustrated with NHS

[Catlady1978]

hi. I don’t even know if I ‘belong’ to this group. I’ve always had heavy periods and thought nothing of it (I mean doesn’t everyone have pain at that time of the month- I wrongly thought) until about 8 years ago when my gp diagnosed me with anemia. She said it was almost certainly caused by periods. And the pain, both during periods and in between! After the anemia kept recurring, I was sent for a scan and they discovered I had 2 endometriomas on one ovary. I waited just over a year to see the gynaae and she prescribed me a med I later discovered is dangerous for me to take. Still no diagnosis nor any attempt to get one- in the meantime the endometriomas have grown and I’ve (after another scan) got another on the other ovary. If it not endometriosis then what is it? Not got another appointment either ! I’ve tried phoning and my gp has written, but neither has had a reply. How do I navigate the NHS right now? I had hoped my appointment in Nov would provide some answers, but just given drugs and sent away.

[Moon_maiden]

Hi

Unfortunately we have to push these days to get answers. I always request copies of medical records, very useful at these sort of times 🙂

If you have the letters from the diagnosis of the endometriomas then give the secretary a call or email. This is Endo, sometimes called chocolate cysts. Scans often don’t show Endo, although they are also trying to reduce surgeries. It’s important to find out how bad yours are. PALS can sometimes intervene between patient and consultant and you should have heard something.

Ask GP to send a message to the consultant again, they can do it easily online through the system. Tell GP to refer you to an Endo specialist as well, it’s important you speak to a specialist. Ask them to include private hospitals in ‘choose and book’ sometimes they are quicker when you compare and you’ll see the actual consultant rather than registrar. It’s also quicker for scans and treatments, still NHS.

Good luck 🙂

[Lindle]

Endometriomas are ovarian endo, one of the three types of endo, and so it is a diagnosis. Endometriomas are deep endo and when they are found it is almost always an indication of deep endo behind the uterus called rectovaginal endo (a second type) but basic sonographers in general gynaecology are only trained to look at the reproduction organs so they don't have the skills to look for deep endo elsewhere. It really is an opportunity missed as rather than send you for a second scan of the same limited value, you should have had a more advanced scan to look for deep endo elsewhere.

Treatment is essentially for pain and/or infertility. You mention that you have pain in between periods - deep rectovaginal disease will often give lower back pain, often radiating down the leg(s) as well as bowel problems alongside the typical pelvic pain. Sitting and/or walking can be painful with shooting pains up the bum and vagina.

There is a treatment pathway to follow - will DM you as there is too much to put here. x

[enyaendo in reply to Lindle]

Hey, could you possibly DM me the treatment pathway, I'm in the exact same position

[Lj250 in reply to enyaendo]

also in the same position, waiting 8 months so far for a referral from my GP for an initial consultation and/or scans, but almost certain the endometrioma is back after my last laparoscopy, when I was told I didn’t have endometriosis but ’just’ a chocolate cyst..

[erinette in reply to Lindle]

Hi, I would also really appreciate details on what to request. I think I have a recurrence of endometrioma following a laparoscopy in 2021, but given my experience back then I'm not confident of getting the best advice.

[ccfd9]

it depends on the size of your endometriomas. There is research that shows that NAC can reduce the size of endometriomas. What you do not want is for those endometriomas to burst as the pain from that is horrendous. Talk to a good nutritional therapist like Dian Shepperson Mills who has attended nearly all the World Endometriosis Conferences and she wrote the book “Endometriosis: a key to healing and fertility through nutrition”. She can be found at endometriosis.co.uk/

[Faithstar]

Hi , I just read your post and can really relate to what you are going through, my advice is to contact your local MP and inform them of everything you have been through they should write to the director of what ever NHS borough you are with and at least get you some answers and get you the referrals you require. Once an MP is involved they act pretty promptly may be not with treatment but at least you will have dates and some form of treatment path.

Best of luck x