Missed endometriosis? Advice please!

[Billielaurenxo]

Apologies for the long post but I really hope someone will take the time to read and get back to me!

I started my period when I was 11 years old and within months I began suffering symptoms of what I now know to be endometriosis. But for years I was told it was just ibs and period pains.

Fast forward to 2015 and I was living abroad, I needed emergency surgery for a ruptured ovarian cyst. It had tore my ovary and I was bleeding internally. After the surgery, the consultant came round and told me my tubes were blocked but had been cleared and they had found endometriosis but had burnt it off.

Shortly after, I fell pregnant with my son. I returned to the uk and the pain eased. When my son turned 18 months, the pain returned worse than ever before. I was in and out of hospital with the pains. The consultant at my local hospital finally agreed to do a laparoscopy to see what was going on. The day of my pre op I found out I was pregnant again so they discharged me and told me I don’t have endometriosis because people with that illness can’t fall pregnant.

My son was born in August 2018 and by December 2018, I was crippled in pain again. I managed to convince my GP to refer me to Liverpool women’s hospital endometriosis clinic. In March 2019 I went in for a diagnostic laparoscopy. Afterwards, the nurse told me there was no endometriosis. No biopsies were taken and that they were sending me to pain management. That was it. I was discharged.

For months I’ve just got on with it. Dealt with the pain. But it’s getting progressively worse again. I was admitted over the weekend due to the pain but discharged after scans were clear, all except fluid in my pouch of Douglas. I’ve done loads of research over the past few days and I keep hearing loads of good things about Wirral university hospital. Apparently it’s BSGE endometriosis specialists with Dr rowland being the leading consultant.

I phoned my GP this morning, explained everything and she has put the referral through 🥳 she went over my previous scans and every time I’ve had free fluid in my pouch of Douglas. She also said the report from my laparoscopy in the women’s hospital said ‘peritoneal defects on the left and right side’ she couldn’t tell me what that meant and the consultant at the time never mentioned it so I’m hoping the hospital in the Wirral can shed some light but I was wondering if anyone else had any idea what this could mean?

Could she have missed the endometriosis?

I’m worried that the other hospital won’t accept me as I’ve had a laparoscopy previously and they’ve found nothing!

Any advice would be great.

Thanks xxxx

[Lindle]

The abdominal lining (peritoneum) should be smooth and shiny as it wraps around the organs. Defects can take various forms such as small holes, areas of scarring and pockets where a fold occurs. These faults can be congenital or acquired. When accompanied by pelvic pain they are often associated with endo but their existence alone doesn't confirm endo.

Endo can often be missed by general gynaecologists as it is requires great skill but there are referral criteria to get to a BSGE centre, usually you have to have confirmed or suspected severe endo, so you might not be accepted at this stage. The NICE guidelines do require you to be seen only by a surgeon with a special interest though, even in secondary care. If your GP referred you through Choose and Book you may find the referral has been sent to his team in secondary care and not the tertiary specialist centre. I think with Covid backlog the centres will probably only be taking cases that fulfil criteria at the moment. You will know when you get a letter.

A small amount of fluid in the POD is normal but an excess is usually a sigh of inflammation such as from endo. The peritoneal fluid in women with endo has inflammatory chemicals in it and since you were already diagnosed abroad this is typical. Do you have any paperwork from that lap confirming endo?

[Moon_maiden]

I’d pursue seeing the specialist, can you afford a private consultation? They can add you to NHS list after if they choose to. If you don’t have the report from your lap you can request it from the hospital. If it’s Europe anything electronic is free, the same regulations that are here and also across Europe. Not sure if the hospital websites for abroad have forms for this though.

There could be other things wrong as well, is GP doing any other tests such as bloods?

[GoldenGirl2002]

I can’t believe this! I had a very similar experience, I had a laparoscopy at the women’s in August and was told I had very superficial Endo on my peritoneal membrane that was hardly classed as Endo, ovaries and reproductive system were all fine. After my symptoms persisted (vomiting and passing out daily with pain) my consultant there said my only option was to ‘stay positive’ so I got a second opinion. The new consultant offered to remove the Endo on the membrane but when he did the surgery he found excessive Endo all over my bladder, both ovaries, behind my vagina and all over my pelvis. I’m so shocked this was missed and there was only a month and a half between surgeries! I’d definitely seek a second opinion! Xx

[plotments in reply to GoldenGirl2002]

That's awful......have you made a complaint to the hospital.....or asked for an explanation?

I didn't have a very good experience with consultants/ Laps at this hospital either!!

[GoldenGirl2002 in reply to plotments]

I’d originally made a complaint about the treatment that I’d received as when I went in with pain I was told to be quiet and physically moved and denied a wheelchair when in pain. I still haven’t spoken to my consultant there since my last surgery so I’ll be interested to see what she has to say! Xx

[Billielaurenxo in reply to GoldenGirl2002]

Who was your consultant if you don’t mind me asking? X

[GoldenGirl2002 in reply to Billielaurenxo]

She’s called Cara Williams who were you seeing? Xx

[Billielaurenxo in reply to GoldenGirl2002]

Monika Oktaba. I’ve heard nothing but negative stories about her from others so I’m glad it isn’t just me. She’s not an endometriosis specialist so I’m hopeful I’ll get more answers at arrow park! Xxz

[GoldenGirl2002 in reply to Billielaurenxo]

I had the same issue and I think because the coil didn’t work for me she didn’t know what to do next! Good luck, let me know how you get on xx