Endo specialist - BSGE Provisional Endometriosis Centre and Accredited Centre

[shukudai]

Is it only the number of the cases make the difference between an Accredited Centre and a Provisional Centre? Or is better doctor in an accredited centre...as they would have more experiences?

I live in Leicester and I was looking for a specialist and the nearest Provisional Centre was in Stoke on trent a couple month ago but now Northampton General Hospital has a Provisional Endometriosis Centre and it would be nearer for me.

I had a diagnose lap in October 2013 and found a lot of adhesion in my pelvic area and some endo (not much explanations but as far as I know I have them at least the PoD and on my womb). I have chest problems with my period and my respiratory doctor is suspecting I have endo in my chest area. The doctor said from my symptom I might had a minor chest collapsed in December but I didn't go to see a doctor so it couldn't be confirmed. Since then I keep having minor pain so I may have adhesion there. I have coughed up a bit of blood during my period as well. I was told to have a X-ray if I have a chest pain and breathing difficulty next time.

I had a Decapeptyl injection in the end of February. Unfortunately I had bad side effect and I couldn't continue so I only had only one injection. I haven't had period yet but I have a feeling I may have it quite soon.

I will have a gyna doctor (with my current consultant resistor) in the end of June to discuss the outcome of the Decapeptyl treatment and further operation. My injection was unsuccessful and I do not wish to have anymore GnRH injections and I can't take the pills so a hormone treatment is not good for me. I don't wish to have a Marina coil as it is not easy to remove if it goes wrong and I don't seem I go with very well with hormone treatment. Any hormone change makes my migraines horrendous.

I am going to push removal of endo and separation of adhesion operation at the next appointment with my local hospital. I had 3 diagnostic laps but haven't actually had treatment operation. But if they won't give me lap for some reason, I will give up on them and want to ask my GP to refer me to the endo specialist.

Do I wait for a long time for a specialist appointment? Does provisional centre waiting time shorter than accredited centre?

Does endo (provisional or not) centre check my chest area as well?

I am thinking to go to Northampton General Hospital Provisional Endometriosis Centre for the specialist. Has anyone used this hospital before? Any advice please

Thanks xxx

[Impatient]

There is a list of criteria for gaining full accreditation, part of that is registering every COMPLEX rectovaginal endo surgery they complete each year. that's the only surgery that is needing to be notified back to HQ as it means they are getting enough of the complex ops locally to hone their skills and they are keeping up with training and applying new surgical techniques. They can and do carry out umpteen other endo surgeries all the time too, but it's the complex ones involving bladder and bowel that are monitored and need feeding back to the BSGE. they would also need a corps team of named colorectal and urology and gynae surgeons, and as per the new NHS guidelines for complex endo cases there must be a named endo nurse to assess patients before during and follow up their cases after the complex surgery.

the NHS guidelines for complex surgery is an interesting read

but the link i used to have for the pdf has been removed and i can't yet find a new one.

anyhow waiting lists do vary around the country and yes they will involve other surgeons if needed and you are found to have lung endo which can cause a catamenial pneumothorax, which it sounds like you may have had.

Lung /Diaphragm endo is rare, but certainly not unheard of and there are few ladies on this forum who have or have had it.

If you are suspected of having lung endo - expect your case to be fast tracked which is great news on the queue jumping front. A catamenial pneumothorax can be a life threatening event so it is quite right that you are seen to quicker. and if it happens again, without hesitation go to A&E immediately.

i wouldn't rule out mirena either, it is only 20% of the hormones that get used in BC pills, a considerably lower dose and because the dose is a constant one and not relying on working its way through from your digestive system to the uterus via the blood stream it is much more stable, delivering the hormone directly to the uterus where it sits.

you can ask for the strings to be cut long so that makes removal easier should the need arise and though this does increase the risk of it getting caught and accidentally pulling it out, it also means you can remove it yourself if you absolutely have to and there is no accessing a nurse at short notice, though this is definitely not recommended practice and i would much prefer you to leave it in so you can get the delightful benefits of it actually stopping your periods for the long term. It is a life changer if you can put up with the tweeks and twinges while it settles in to place.

I would most definitely ask your GP to refer you to an accredited endo centre asap.

I would also recommend perhaps you give the BSGE a call to see if they can recommend which endo centre has reported experience with CM PMX- it is still so rare that not all will have been involved in such surgical cases, and i am sure they will know of any surgical team that has addressed this with endo. It may be that you need to go to London to see the right people if they cannot be persuaded to come up to N/Hampton to see you, though I suspect there will be quite a bit of keen interest in your case. These surgeons do love out of the ordinary cases that they can learn from.

Use the search box on the green bar and type in Catamenial pneumothorax to see the other ladies who have had this and send them a private message to find out where they got their treatment done.

Very best of Luck.

[shukudai in reply to Impatient]

Hi Impatient,

Thank you for your thorough information.

You started to persuaded me about the coil. I will have to research more. I will also research Lung endo specialist center.

Take care

xxx

[LeyaC]

I have had experience with two different provisional Endo centres and not one of them helped. In fact they tried to blame me for the pain and not the Endo. I have recently seen an accredited Endo centre which is private but does NHS too, and they have been amazing so far. I find that because they have less experience and they haven't worked on many people with Endo in particular, they're not very clued up on Endo and try to put you off the idea (even though I'd already had a lap to prove this) I also have suspected diaphragm Endo which causes chest pain throughout the month. Don't go to stoke as I went there (I only live in Stafford which if you dont know is the next town along) and the lady that you see isn't understanding at all. I went in and saw a junior doctor who was nice and didn't do internal because I didn't want it, then she barged in at the end of the consultation and made me have one. After that without actually asking to do a lap or anything she said that I am making it up in my head and gave me anti depressants.

As for waiting times, I had to wait almost a month just to get a date which would then be about three weeks later with provisional but when I went to the accredited centre I had the referral sent through on one Monday, the following Monday they called up and said that I had an appointment at half 3 on the Monday after that so my initial waiting time to actually see the specialist was only three weeks. As for places that operate/treat Endo on the diaphragm or lung, my specialist wants to do a laparoscopy but check my whole stomach cavity so check all pelvic organs, then move onto intestines, bowels, bladder and check my diaphragm as well.

You may have to travel to see them (I travel 4 hours away to see mine) but its worth it if you get the right care. I have recommended lots of people to him and every single one says that they're so much better off going to see him and that he's the best they've seen so far. If you'd like a recomendation you could pm if you like as you can't name people on here.

Good luck and take care,

Leya xxx