Endometriosis UK
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Advice please

Hi everyone,

I'm new to this so wanted some help/advice. I've been suffering from sever pelvic pain for 18 months - 2 years on and off. Been back and forth to the drs and after a coil check, swobs & ultrasound everything was 'ok'. I'm still suffering with pain which has got worse over the last 8 months and is more frequent now, sharp shooting, pressure around my front & bottom that hurts when I go to the toilet, bleeding/spotting out of nowhere, always suffered with pain during intercourse & extreemly heavy periods. Sometimes the pain is so bad i feel like im in labour and have to sit on the toilet to relieve it. Ive got 2 young children so know what labout is like.

I decided to go private so last Wednesday I went for a consultation. After various questions and external & extremely tender internal the gyno suspects I have endo. I'm waiting for my surgery date. Meanwhile I'm sat at home worrying about It, the cost of it and if I've done the right thing. To wait on the NHS would be months and it's really getting me down to the point where daily chores, caring for my kids and walking are becoming difficult. I'm in pain 3-4 days a week then some days nothing but a numb pulsing/throbbing pain.

Any advice would be much appreciated. I have been reading posts that I've found helpful and wanted to put my story out there for feedback/thoughts.

Many thanks ladies.

7 Replies
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Hi, sorry to hear you’ve been suffering so much!

Just a thought, as someone mentioned this to me yesterday - could you ask the private doctor you saw to write a note to your GP asking for a referral on the NHS for further investigations and treatment? I didn’t know this was possible and I’m not sure if it will help you but I thought it was worth mentioning to you as I wasn’t aware this was an option x

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Hi Abigail16

Thank you for replying. Yes the gyno at the private hospital did say she can refer me back to my GP but I would be put on a waiting list which could be at least 6 months. For me id rather just het it over with but also worry that I'm going to go through this procedure and nothing be found and I'm left still in pain.

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Wow 6 months! No way that’s too long I thought there would maybe be some sort of fast track if that happened but obviously not

Hmm yes unfortunately this has just happened to me although I went through the NHS and waited almost 3 months for my lap. for that reason I would 100% make sure you see a specialist in endo.

Did you see just a general gynaecologist? I’ve been told that they can miss it easily, I might have to have another lap with a specialist now. So I would suggest if you can afford it, get the lap done with a BSGE centre with a specialist. That way you don’t have to go through the lap twice because a general gynaecologist missed it xx

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Ah thank you so much for informing me of that. I've never heard of it before. I have looked up her profile and it says she is a general gynaecologist with a special interest in minimal access surgery and endometriosis. Does that sound right?

Sorry to hear your having to go through it again. How frustrating for you. Is it an easy procedure to recover from is endo is found and excersised? Hope you don't mind me asking. X

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It’s no problem! Well if she has a specialist interest in endo then I would say it’s better than a general gynaecologist but at the same time, if I were to go through this again knowing what I know now I would want a BSGE accredited gynaecologist to do it. I suppose it’s up to you really I think the waiting list for BSGE centres are a lot longer than general gynaecologist

It’s not definite that I would have to go through it again yet but my doctor said they’re happy referring me to the BSGE centre closest to me and if they think it’s likely it’s been missed I think I will have to have another lap.

I didn’t have any treatment at my lap so I don’t know the recovery time if you do but I would say my pain is almost back to the way it was before the lap and I’m 8 days post op now so it’s actually not bad at all. I would say the way I’m feeling I will be back to how I was pre op once I’m at the 2 week stage

Hope this helps, if you have any more questions feel free to message me x

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Remember most Consultants you see privately work in the NHS, so what you pay for is their time. Endometriosis tends to be a chronic problem so just because you have surgery doesn't mean to say that its going to be all wrapped up and finished with! And what you need is a Consultant and/GP that you can build up a relationship so you are not having to pay lots of money and/or moving from Doctor to Doctor. Every time you see somebody new they will need access your previous history and surgery notes and most will do nothing before they see them which means delay.

In an ideal world you will see the same Consultant that you saw privately.

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Thanks so much for that 3carmel7. It's good to know and have an insight. I will defintley get back onto the GP I saw to give them heads up. X

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