Endometriosis UK

Finally have some answers!

Had my lap yesterday and I finally got the answers I've been looking for for so long. I've got endometriosis in the POD and a fimbrial cysts on the right side. I've had the coil inserted. My only problem is that no one actually explained these results to me, I was told it was all okay and then I got in the car to have my partner read all of that. I just burst into tears (thanks anaesthetic!). Anyway, my question is can anyone explain all of this in more detail. I'll leave the paragraph down here:

R sides fimbrial cyst. Right ovary and tube normal, left ovary behind sigmoid (is this normal?) AV NS uterus (no idea what this means!) mild endometriosis in POD more towards left side.

I don't have a follow up with my gynae so have no way of asking these questions! I'd also like to add that, ladies if you feel something is wrong - please keep pushing! I had to fight my doctor for a lap and now I have the answers.

10 Replies
oldestnewest

If it's in POD I'd expect you should be referred on to a BSGE endo centre as that is defined as RV is classed as severe endo as it is deep even if not much is found.

This is the NHS treatment spec. google.co.uk/url?sa=t&sourc...

1 like
Reply

Thanks for this

1 like
Reply

The mirena coil may mask the symptoms but it won't treat the disease. Leaving the disease untreated can lead to further problems down the line. Did they excise the endo they found during your lap? If not then you will need to be referred to a specialist who is able to do this. I think it's terrible that you were sent away without any information or a follow up appointment.

1 like
Reply

Not that I'm aware of. Literally, I woke up and I was kicked out of the unit after about an hour. Not told anything. Then got into the car for my mum to read the discharge summary saying I have endometriosis and a fimbrial cyst. Obviously I burst into tears but all it says is to follow up with the GP In six months of symptoms persist. I think I'm gonna get myself referred to a specialist now that I have an actual diagnosis

2 likes
Reply

Hi, just to add that there is some hope that the Mirena can treat the disease. Three years after my first Mirena I had another lap and the endo had retreated so far that my gynae didn't feel it was necessary to surgically remove. I expect it all depends on how sensitive each of us are to hormones.

Reply

If they don't refer you with RV Endo they are breaking the NHS treatment contract. See last paragraph about referral.

"Laparoscopic surgery for deeply infiltrating endometriosis or for recto-vaginal endometriosis

is considered to be a specialised service due to its complexity and high risk of morbidity. The

British Society for Gynaecological Endoscopy has established criteria (http://www.bsge.org.uk/ec-requirements-BSGE-accredited-endometriosis-centre.php) for

centres carrying out such work and accredits departments that reach its standards. The

criteria include:

 Working in a multi-disciplinary team with a named colorectal surgeon and nurse

specialist

 Holding a dedicated endometriosis clinic

 Operating on a minimum number of patients with severe endometriosis each year

 Submitting operative and quality of life outcome data to a national database

 Audit their outcomes

These criteria are designed to ensure quality care to women with complex surgical needs to

minimise the risk of surgical complication and maximise the opportunity to deliver the best

outcomes. Effective experienced care such as this will reduce the cost to the taxpayer by

reducing the current experience of multiple less adequate procedures, long-term medication, multiple hospital investigations and recurrent admissions.

Referral

Patients with known severe disease, which has not been adequately treated or has recurred, are likely to be referred by primary care clinicians.

Gynaecologists in secondary care, who identify severe deeply infiltrating endometriosis or recto-vaginal disease at laparoscopy, or open surgery, will refer patients from secondary care to an Endometriosis centre.

Laparoscopic images and or video, of suitable quality and format will be included with the referral wherever they are available as this may prevent the need for repeat laparoscopic pelvic survey after referral. "

1 like
Reply

This is really interesting. Nothing was mentioned about a referral to a BSGE centre, I was sort of just left a little bit. I'm going to try and get myself a referral once I've recovered a bit more but it's dawning on me that they've actually treated me awfully.

1 like
Reply

Unfortunately it's more common than you would think. There was an APPG report on women's health back in March which highlighted how badly endo ladies are being let down.

Probably whoever carried out your lap didn't have the necessary skill to treat you. Better to go to an excision specialist who knows how to safely and effectively remove the endometriosis.

Thanks to NHS choice you have the right to request a referral to a particular hospital and/or consultant so have a look for someone experienced in treating the areas where you have endo.

Take care x

2 likes
Reply

Ardenrosr is totally right. This is sadly all too frequent an occurrence. Women are having to learn about their disease themselves and then fight GPs and general gynaecologists to get the right treatment.

I would request your operation notes from the secretary ( you've a legal right to see them) and find out if they plan to refer you on. If not make a complaint via PALS of inappropriate treatment of severe endo in breach of NHS contract.

2 likes
Reply

Ardenrosr is totally right. Unfortunately even hospital general gynae are poorly trained and skilled in Endo. This is a frequent occurrence and women are having t learn about their disease themselves and then fight GPs and hospital surgeons for the right treatment.

I would request your operation notes ( if they are slow or difficult, you have a legal right to them under data protection law) and find out if they intend to refer you. If not then make a complaint of inappropriate treatment of severe endo to PALS.

Reply

You may also like...