Endometriosis UK
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27, tried every option, don't know what to do. Any advice would be kindly received! X

Hi Ladies,

If anyone could help me if really appreciate any advice.

I'm 27 and newly single because of my health. Will explain further on.

I had a laparoscopy in 2010 to see if I had endo, they found I had stage 4 on my stomach, bowels, all lady parts etc and PCOS plus everything is stuck together, basically a right Royal mess.

Whilst in the operation the surgeon perforated my bowel, without realising he stitched me up and sent me home!

I became seriously ill, after 3 days I was rushed into hospital and they just said it was the remaining wind leaving my body.

I demanded I felt like I was dieing- no doctors believed me- the usual 'you being dramatic' but one surgen took me seriously thankfully and rushed me for an emergency laparotomy to which they discovered I had scepticemia and peritonitis.

She saved my life.

Since then I have had every type of birth control, 6 months of GNRH antagonists, anti-inflammatories, painkillers, endo diets and nothing works.

I am managing the pain the painkillers, I have been under the consultant regarding going for IVF with my partner.

Because obviously- the Gyne doctors only answer now is 'Have a baby'!!

Well me and my partner had been together for 8 years, we went once before for IVF but my partner pulled out.

Again this time recently he's pulled out. Said he can't do it.

I feel that this is the last time he will ever do this too me, so it's over. He's incredibly selfish and had serious commitment issues, my fault for putting up with it for so long I suppose.

Now I need to concentrate on me, he is selfish and after everything, he still doesn't really understand everything in going through.

So what are my options now...

I'm 27 with no children and do want them!

Option 1- Remain the same, in hurrendous pain, signed off work (getting me in trouble with work) and how long can I do this for? For ever?

Option 2- Have IVF on my own? I know ladies have done this, and that's amazing but seriously is not what I want to do?!

Option 3- Have a hysterectomy? Never have children but have a better, less pain filled life?

Option 4- SCREAM!

Seriously, I actually don't have a clue what to do next with my life.

I'm sick of being pumped up with painkillers daily, heat pads, the pain is now starting to effect my lower chest/ribs and I just know it's spreading to my lungs. The doctor has also said it probably is there but I can have tests, but there's nothing they can do?

So what can I do?

I've thought about one thing which is freezing my eggs.

Can I get my ovaries out but not have a hysterectomy?

Any ideas would be greatly received.

Thanks ladies.


3 Replies

Hi Jade - I see this is your first post for 2 years. At that time it was asked whether you were being treated in an accredited BSGE endo specialist centre but there didn't seem to be an answer. Wherever you are in the UK the NHS requirements are that your severity of endo must only be dealt with in such a centre where the surgeons have undertaken at least two years of advanced excision training. General gynaecologists will usually have little experience with complex endo and since the advanced surgeons will mostly,if not all, be in the specialist centres then a general gynae would be in breach of regulations attempting to operate on someone such as you or leaving you effectively untreated. Birth control medications and even GnRH agonists such as Prostap will have little effect on severe disease and this is acknowledged by the NHS itself. The only recommended treatment is excision of all endo wherever it may be.

So can you confirm if you are being treated in a BSGE accredited centre. You will see the list at the link below so can you go through and see if your gynaecologist is named at one of the centres. These have been in operation since at least 2009 for the treatment of severe endo so frankly any general gynaecologist attempting to treat you after that date should be sued. If you are at a centre then you need referral to a different one that may have more skilled surgeons - even the centres can vary when it comes to very complex endo so it is important to see the best. Also where are you in the UK as the referral process varies?



1 like

Hi Lindle,

Thankyou so much for you reply.

I am under the Gyne at Ormskirk and Southport Hopsital based in Lancashire.

this is not a BSGE endo specialist centre, nor have I ever been advise about this?!!!

Do I need a referral from my doctor or the Gyne?

I'm in Lancashire.

Many thanks



Hi Jade - the centres were set up to prevent women such as yourself from being treated inappropriately in general gynae in the way that you have been. There are several centres in your area and it is appalling because they simply can't not know about them. Referral can be by your GP, again to be sure you are not left in the hands of general gynae. Click on my name and look at my post on how to find a centre and be sure to look at all the links. Write down everything you want to say before going to your GP and particularly take note of the NHS contract for severe endo (take a copy to give your GP) and the 'requirements' section of the drop down menu of the BSGE site that confirms referral can be from primary care (a GP) or secondary care. Don't let them tell you it has to be the decision of a gynaecologist as it does not as that would defeat the object of the centres.Take a copy of the list of centres and the requirement page. Also you could take a copy of the NHS Choices pages that confirm your right to see who you want.


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