Hi everyone
I am becoming increasingly anxious about my 1st laparoscopy due to happen in a weeks time and I have read lots of posts on here talking about using specialist centres. I am not sure if my surgery is being carried out by a specialist centre. Is anyone able to tell me if there are lots of centres? I know my surgeon specialises in endometriosis but that’s all I know. Thank you
Look on bsge.org.uk and this will tell you if then hospital is a endometriosis centre. I think u need to have a disgnosis to be referred to the endo speaclist team though? So u usually have a lap done but gyne and if they find it but they cant treat it or its severe you then get referred onto the endo specialists. Thisnis what I think I understsnd going off what Ive read up on and my gyne said same to me he said if they find endo he cant treat he would refer me to the spealist centre x
Thanks for this, I will take a look as it all makes me a bit nervous. I assumed lots of people used a gynaecologist and then got referred on if it was found to be more severe. I have a feeling mine is in the bowel so I suppose I will have to wait and see what happens. Thanks for your help x
Yes its all so nerve wracking. I am waiting for lap too waited a yr but told another year so upsetting. How long have you waitied for yours? I think u speak to the dr before hand so u can ask him how much expeiecne he has with endo and what would happen if there was a lot would he be able to treat it or are you looking at needing further intervention x
If you know the name of them you can google and there are usually profiles online and they give a brief discriptom of there spealist area.
Good luck let me know how you get on xxxx
I know there’s such a long wait, my friend has severe endo and is waiting for a specialist centre for her treatment but she says the wait is still months away even though she has so much pain every day. I took out insurance a couple of years ago and have needed to use it for another issue so luckily I renewed the policy. I have waited 6 months. I will def ask questions, I have a list ready. I’m sorry the waiting list is so long, I really hope you can manage until then.
I will let you know how mine goes, take care xx
I did also Google my surgeon and his profile looks good with lots of experience, I just think a lot of their profiles look good so I hope the reviews are correct! X
First of all have you had a scan as the diagnostic lap is no longer the gold standard and an expert scan should be done first. This would be especially important if bowel endo might be suspected.
There are referral criteria for acceptance into a centre - there needs to be evidence of severe endo but this doesn't have to be by a lap. If a scan finds deep endo that then acts as a diagnosis for referral to a centre. If nothing shows you can then opt for a diagnostic lap but it must be done by someone with a special interest in endo which means additional training beyond general gynaecology. If a scan showed nothing and it is clear that this surgeon has such specialism then he would be qualified to do it.
I had an abdominal MRI which showed deep infiltrating endometriosis with tethering of the bowel and burnt out suspected endometriosis, 2 small cysts on 1 ovary and then I had a pelvic and vaginal ultrasound which showed a fibroid, it showed the ovaries completely stuck to the uterus and adenomyosis for which a hysteroscopy was suggested with biopsy. The gynaecologist said that she was not sure what stage the endometriosis is at but would be able to confirm after the laparoscopy. My original surgeon fell unwell so has handed me across to her colleague who said he also specialises in endometriosis, particularly laparoscopic treatment. As I have a colorectal issue I am particularly nervous about the whole thing, especially the bowel. I should also mention that I had a colonoscopy to rule out cancer and was told that no endometriosis was obvious inside the bowel. Thanks for your help, I can see that you are very helpful with your information. The thing I am most scared of is any constipation. I had to stop the mini pill as it was giving me awful headaches and depressed feelings..
Deep infiltrating endo is classed as severe and must only be treated in a specialist endo centre; no gynaecologist in secondary care (normal hospital) should even attempt a lap on you. The diagnosis is already made by the MRI and in that case a lap should not be done to 'diagnose' the stage. Firstly, treatment is based on pain and by balancing your quality of life now against surgical risks and only a suitably advanced surgical team in a centre can discuss this with you. They will review all you reports and make a plan; it will be complex surgery and you need to be fully involved and in agreement with the plan. I am so glad you posted on here.
If you are in England the link to the the NHS England treatment specification for severe endo is below and MUST be applied for treatment in specialist centres and the definition of severe endo is clearly described as:
'Severe endometriosis for the purpose of this specification is defined as either deeplyinfiltrating endometriosis or recto-vaginal endometriosis. Deeply infiltrating endometriosis exists where the disease invades at least 5mm below the tissue surface and can occur in a variety of sites, such as; bladder, pelvic sidewalls, ovaries, pelvic brim, bowel surface and diaphragm. Recto-vaginal endometriosis is endometriosis which involves the recto-vaginal septum area (recto-vaginal septum, vagina, utero-sacral ligaments, rectum). There are many classification systems for endometriosis but none are universally accepted. The definition used here would accord with grade 3 and 4 disease used in the revised American fertility Score. (1).'
england.nhs.uk/wp-content/u...
If you are outside England the same criteria apply.
You mention private health and we are finding that many women are being severely disadvantaged in private care with gynaecologists working outside of what would be required on the NHS. It is so tempting to want the speed of private care but the standards must be the same so you must only be treated in the equivalent of a private endo centre involving an advanced team of 2 lap surgeons plus colorectal and urologist as needed.
If you would like to DM the surgeon's name who you have been passed to I can look to see what sort of level of expertise they have.
x
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