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Endometriosis UK

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I'm new here and am waiting to be seen on the NHS - should I go private? (Northern Ireland)

eamc profile image
eamc
8 Replies

I'm 22 and have suffered from incredibly heavy and painful periods since around the age of 16. I have now only started to be taken seriously (by a new GP) and have been referred for tests. However, this could take up to 9 months. I'm tempted to go privately just to get a definite diagnosis quicker, and any of the required treatment. My mother had endometriosis and ovarian cancer, and struggled with fertility and I don't want to suffer the same way.

A few ladies on here have recommended BSGE centres, however there are none in Northern Ireland. I was wondering if anyone knew of good consultants/specialists I could go to somewhere in Northern Ireland?

Thanks xx

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eamc profile image
eamc
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8 Replies
Lovisa profile image
Lovisa

google.com/maps/d/viewer?mi... This might help you, it's a map used by the r/Endo and it shows doctors that people recommend.

eamc profile image
eamc in reply toLovisa

Thank you so much!!

afiAra profile image
afiAra

Hi dear my experience with private has been horrible please stick with nhs

AnnieMac123 profile image
AnnieMac123

Hi... I live in Donegal and was onwaiting list here for years... My symptoms got worse and my Gp referred me to north under a cross border scheme in April 17... I attended a private clinic in derry and the consultant there was amazing..she actually listened!! my family history was taken into account for first time ever, mum +sister also had endo.mums resulted in unplanned hysterectomy at 39! I was 37 and worried sick I was heading same direction!

Following an internal exam she went through her findings and noted that my womb was heart shaped and this it self could cause the heavy periods I have had..but also saw chocolate brown cysts...she put me on tablets to help reduce the heavy periods (they worked!) At this 1st appointment she was reluctant to do lap but @ review appointment 3mts later my back pain was terrible and she organised a lap for august and done this as a NHS patient in coloraine....she found I had stage 3 endo and also that my ovaries were fused together! I was given 3mts of prostrap injections to stop my periods and allow my ovaries to heal.

It's been 7mts now since my op but the pain and even the heavy periods have eased so much... There's no magic cure but having an actual term for what's wrong gives u great peace of mind and u know what to look out for too!!

We are not allowed to mention Dr's names on here! So if there is anyway u can private message me please get in touch..my treatment on the NHS has outweighed anything I have even got in HSE... Please stick with NHS the waiting was not as bad as predicted .. Like me that first appointment may at least result in a prescription to ease off the heavy periods while u wait for further investigation...

I might be the exception not the rule here, but I went private when it came to my referral and treatment because I have insurance and thought I might as well use it! I'm in England not NI but I had a wonderful experience privately. I initially spoke to my GP, who, like you, said it could be months before I was seen by a gynaecologist on the NHS, so I got an open referral and claimed on the insurance to see a consultant in a private hospital not far from where I live. I was seen within a week of my referral, and my consultant was lovely!

She listened to me, made me feel as though I mattered and that my symptoms were real. She couldn't feel or see anything on an internal exam, so I was given a transvaginal ultrasound which was uncomfortable but wasn't horrendous. After that revealed nothing more, I went back and spoke to her about a lap. Initially, she wasn't keen (most drs aren't when it comes to just suddenly agreeing to surgery!) but when I said I really wanted answers for my pain, she agreed to schedule one for a few months time and if my symptoms eased I could just as easily cancel it. I was lucky going privately because I could pick my surgery date and therefore I didn't have to take time out of college to recover (part of my reasoning for going private so I could be seen quicker was the fact that my health was getting in the way of my studies).

It was done, she discovered patches of endo and a peritoneal cyst, both of which were treated! I had two weeks recovery in my half term, then a follow-up appointment not long after that. All the staff in the hospital were great, I had my own private room (with private bathroom!), a tv and the food was actually decent. I don't know much about how the private sector works in NI, but if you can, I'd recommend private care. Often you don't have to wait to see anyone and you can plan things around you.

Jbp2 profile image
Jbp2

I sent a similar reply to another Northern Ireland poster - If I had a time machine I wish I would have known about a page called Nancy’s nook on Facebook and gone to a surgeon who performs excision only surgery. There is an international list of recommended surgeons, recommended by patients. Any surgeon that uses ablation/laser/diathermy during the surgery is not educated enough and 80% chance of recurring again in less than 2 years. I’m in the republic and no surgeons on island of Ireland do excision only at the moment (confirmed also by endo assoc of Ireland). Do your research and don’t end up like me at 29 with failed surgery and having to start process all over again 2yrs later. 2 or 3 recommended surgeons in UK including peter Barton smith. Also some in mainland Europe but almost all are private but in my opinion is worth it. I’ll be saving up to travel but some insurance may cover some costs. I know stories of women having up to 8 laps and still issues from inexperienced gynaecologists. Think about it, if a gynaecologist is delivering babies half his or her time they haven’t built up the experience to do successful surgery. I know it’s hard being in pain but excision is really the gold standard and if endo is on your bowels/bladder you want a surgeon who has the experience to excise it safely. Hope this helps, I wish women didn’t have to do all the research but that’s the way it is at the moment.

eamc profile image
eamc in reply toJbp2

Thanks very much! I did look up Nancy’s nook and as you say there’s no one in Ireland recommended on it. However, I am under the impression that my consultant in Belfast uses excision rather than laser etc. I am only going for my first lap so I’m assuming it will be mainly diagnostic anyway or in your experience if there is endo found will they try and take it away there and then?

Thanks so much for your advice!

Jbp2 profile image
Jbp2 in reply toeamc

Yeah there’s no one in Ireland as far as the nook or the endo associated of Ireland believes that fully uses excision. Some in the north have been know to use excision and ablation on difficult areas (bowel, bladder) so reoccurrence there would be a possibility. My first lap was diagnostic but they operated there and then and I only got the diagnosis after I woke up and all the surgery was done. There are a number of questions that the endo association of Ireland can give you that you can ask your prospective surgeon before you make your mind up. All my symptoms are back and I feel a bit cheated trusting my nice consultant, but he just doesn't have the experience that others do and surgery is a big deal but Is worth it. I hope everything goes well for you.

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