Diagnosed with Endo finally... being sent... - Endometriosis UK

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Diagnosed with Endo finally... being sent round in circles

Ginge32
Ginge32

Hi all

I’m currently at my wits end.

Was finally diagnosed with endo in July after years of misdiagnosis, self administering various meds at the doctors suggestion and I thought I might have a moment or two of pain relief.

Alas I did not.

My symptoms have come back with a vengeance!!!!

I have been immobilised at times with the pain - worse than before.

When I went back to the GP and explained the surgeon carried out ablation rather than excision - rather than refer me to a surgeon who might actually know what they’re doing and get this properly under control, she is now saying it’s not endometriosis (I have the lap pictures to prove it!) and now I’m back having blood and urine tests (seriously I’ve given so many samples it’s a joke) looking for some magical mystery illness.

I just don’t know what to do anymore. I’m exhausted.

8 Replies
oldestnewest

Hey!

I had my lap in April, after being sent round in circles they found endo.

My pain is back and worse than before, and being sent to a bowel surgeon because he told me “it can’t grow back that quickly” thankfully my gp is great and trying to get me to a specialist.

Try and see another doctor, you’re entitled to a second opinion xx

HiddenThis reply has been deleted
Ginge32
Ginge32 in reply to Hidden

I don’t have this, this went straight from The surgeon to my GP. He did give me the pictures from the lap though.

Hey, this is very frustrating! I would recommend to ask for another referral, GnRH analogues will detect if the pain is comming from endo. You could always look at this as an option. It’s not to be taken lightly and everyone’s in a different situation with what’s right for them. It’s medically induced menopause and I’m going through it atm my pain has reduced 75% as I had a similar situ with my doctor and now they realise that yes it was mostly endo pain. Or I would just keep pushing but still request another referral for 2nd opinion. I know it’s exhausting but pushing is the only way xx

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Hannah0091
Hannah0091 in reply to Hidden

I understand where your coming from but this information was what my surgeon said. Do you tho k he’s wrong? The GnRh is one of the only options I had left as I have tried most forms of relief. So he wanted to try it to see if my pain reduced as even if the lesions were producing oestrogen surely the GnRh would temporally stop this happening? Also they have so little forms of relief available and treatment outside of surgery doesn’t really exist.

You need to change GP. I could never handle a physician who is not up to date with current surgical procedures and knowledge.

Also a diagnostic laparoscopy does often make things worse if endo is not treated at all or not treated effectively like with ablation.

Please do reach out to me for names of extremely skilled EXCISION surgeons who work within the NHS

The Gps are so ignorant when it comes to women's heath care and, above all, endo. The patients are light years ahead of GPs. You are entitled to ask for a second opinion, select a BSGE Centre as explained above by Stefania. Excision is the gold standard treatment. You have to be strong in front of the GPs. And stand your grounds. It is your health, not theirs. Take good care of yourself. 😊

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