Suspected Endo

[Meadowsweet11]

Hello,

Just writing for some advice and support really as I feel completely alone and like no one understands at the moment.

I have had painful periods for about 10-12 years (I’m now 29) and despite many, many trips to the gp over the years and my mother always wondering if I had endometriosis, I was always just fobbed off with painkillers/contraceptives/anti spasmodics etc. I also have a history of intermenstrual bleeding and utis.

The pain has varied from mild to extremely severe throughout the years, mainly during my period but not normal period cramps, often really bad stabbing pains like someone was twisting a knife inside of me. As a young girl I was just told that periods are painful and it’s all normal. It has on a number of occasions interfered with my life so much that I have had to take days off work/school and at one point was prescribed tramadol because nothing else would touch the pain.

At the beginning of this year the pain got so bad that I felt like I was dying and was admitted to a&e but they couldn’t work out what was wrong and put it down to a uti I was showing symptoms of, and since then the pain has been getting worse but I have been having a nightmare trying to see a specialist.

For the last 10 months I’ve been trying to get a referral to a gynecologist with no luck... my gp are having problems with my NHS number because I’m from Scotland but now living in England and what should be a simple referral has become a constant battle where I call my gp surgery every day and still get nowhere (I have escalated it to NHS England complaints but it’s just impossible to get anywhere with it). Because of this I ended up paying for a private consultation with an amazing female gynecologist who validated the fact that I have been completely let down by the system for the past decade and who said that I show ‘classic presentation of endometriosis’ when I described my symptoms (pain during menstruation, pain when going to the toilet or needing the toilet, esp for number 2, occasional pain during sex and with gas etc etc). I’m now supposed to be getting a transvaginal scan and laparoscopy but it is so difficult to get anywhere with the NHS so thinking I may have to go private, I can’t afford it but may be able to get help from family/a bank loan. Has anyone been in a similar situation? And does anyone have a rough idea of the cost of a laparoscopy privately? It’s so frustrating when no one seems to be able to help and people don’t understand how hard it is

Thanks

[princessk09]

Hey, I’m sorry you’re going through this but I completely understand. I’m 19 and was lucky enough to get a lap within a year and half after first going to the gp

I paid for a private consultation who then referred back on the nhs for a lap. If I went private for the lap it would have £3009 plus any extras like staying overnight or needing more specialist surgeons etc.

However I had my lap 4 months ago and have not seen any improvements. I’m due my 4th period after my lap and I’m getting the same dull ache before my period etc so I’m dreading the next week or so.

If you ever need someone to talk, I’m always here xxx

[Meadowsweet11 in reply to princessk09]

Thanks so much for your support it’s horrible that so many of us have to go through this but it’s nice to know I’m not alone at the same time (although of course I wouldn’t wish this on anyone!).

Sorry to hear you haven’t had any benefit from your lap yet... do you know if they found a lot of endometriosis and where it was?

Thanks again and same here if you need to talk I’m here too xxx

[princessk09 in reply to Meadowsweet11]

I had a bit of endo around my uterus area and a large cyst on my ovary. Xx

[Meadowsweet11 in reply to princessk09]

Oh dear, I hope that you start to feel some benefit from the laparoscopy xx

[luthien]

Hey, sorry to hear you're having an awful journey of it all.

I went privately for my treatment as referral through the NHS was taking a long time. I had the initial consultation, ultrasounds, actual lap with excision of endo and follow up all before my initial appointment came through from the NHS - three ish months.

It does cost, however I have medical insurance through work which covers all the costs. You can if you choose your hospital have a chat with them as quite often they have their own insurance / payment plans. Have a look at BUPA for a guide on costs per month. I am happy to go through how much each stage cost approximately and total costs. Just ask I like that all the care stuff including initial appointments, being able to book my own lap, seeing my specialist, anaesthetist and additional surgeon before the op, having my own room, any time visiting hours, seeing my specialist after, the compulsory 2 week post op, the 4 month follow up, being able to talk to the specialist about any concerns, having one dedicated specialist.

It seems to take ages through the NHS for the intial consultation, then the scans, then the diagnostic lap - quite often they won't do the diagnostic with removal of endo in the same op. Which then could mean a year or more wait from diagnosis to removal of endo as they may want you to try hormones. Even then with removal of endo the NHS tends to prefer ablation (sanding) or laser (heat / diathermy) which although quicker op and speedier recovery has higher regrowth rates. It's really only private that offers excision - removal of endo bit and some health tissue to get the most they can out.

If you work you could get medical insurance through them, or if you have a partner they can add you. Or you can get it individually yourself, or payment plans through hospitals. Some private consultants do work under the NHS so they can assess you privately then do the op under the NHS.

Have a read of my story, hopefully it'll give you some answers and an idea of what happens / what to expect

"All this effort does pay off - my story - hope it helps !"

[Meadowsweet11 in reply to luthien]

Thanks so much for your reply

Interesting to hear other people’s stories. I’m having such problems with the NHS, been trying to get an appointment for 9-10 months but because of some admin problems it just hasn’t happened which is why I might have to go private. It sounds like better care and quicker for private anyway though so maybe it’s worthwhile. Unfortunately I don’t have any health insurance but hopefully can get some money together somehow! I’m assuming that I can’t get medical insurance now as it would be classed as an ongoing/preexisting condition?

So is excision different to laser treatment? The private gyno I saw recommended laser over the burning it out method but I’m not really sure what any of them mean tbh!

X

[luthien in reply to Meadowsweet11]

You can ask at your chosen hospital for health insurance / payment plan, or check out their website, they usually have stuff in place to help as they know not everyone can afford it; they work on it being accessible to everyone.

If you've had a lap to actually diagnose endo then yes it's pre existing, however some medical insurance will still be fine with that as it was on the NHS. If you've not had a lap to diagnose then it's still suspected. Have a chat with an insurance company or the hospital as they'll be able to guide you through the process and what to do next. Just think you're not the only person that's asked the questions you're asking!

There are three surgery methods: ablation (sanding / air), laser (diathermy, burning) and excision (removal). The first two are usually preferred by the NHS as they are quick procedures with quicker recovery. However the last method has been proven to reduce endo regrowth considerably as it removes as much endo as possible; taking the endo patch completely out and a bit of healthy tissue, recovery is slow, symptoms are rapidly reduced. The other two methods (ablation and laser) just take off the top layer of endo leaving the rest underneath, it can result in reduced symptoms but research shows regrowth is higher. Ideally you want a specialist that will do excision / removal of endo. Often you can find out by looking up their info on the web. Happy for you to look up mine as a gude: Mr Philip Kaloo.

Hope that all helps xx

[Lulububs]

Hey

I feel ur pain i have had bad periods since i was 13 im now 44!!!! Yeh that long.

Eventually ended up in a&e and was told i needed to see a gynae ... it turned out it would b 12 weeks then i got canceled so went private and paid £250 to see a gynae... he said u need a lap il put u on my nhs list but im not lying it 12 weeks .... i asked how much private he said £3000 but that was only a diagnostic lap so if they actually found anything nothing would b done?

So then i would b waiting even longer to then have whatever i needes done!

And if i went private would b more money.

So i waited and im glad i did as there was nothing there! Same gynae just waited on his list waited 9 weeks.

It turned out i had a fused vertebrae that was giving me the constant pain and it was pressing on my nerves giving me bowel and bladder pain.

So im glad i never paid out for that lap...

[Meadowsweet11 in reply to Lulububs]

Yikes! Sorry to hear you’ve been through all that, it really sucks.

I am a bit worried about paying out for the laparoscopy and then them not finding anything, however I’m not sure what else to do as the NHS are being so difficult and various admin problems mean I just can’t seem to see anyone, been fighting with them for so long and totally exhausted by it.

I’m interested to know what your symptoms were of a fused vertebrae? My symptoms seem to be very much typical of endometriosis but I’m sure there are similar conditions which cause similar pain.... who knows what I have at this point! My main symptoms are severe pain during first few days of menstruation, pain when going to the toilet around my period and I’ve started to get short lived pain most mornings which feels a bit like wind but lower down and sharper. X

[Lulububs in reply to Meadowsweet11]

Yep that was basically my symptoms. I had no back pain whatsoever considering i had fused and bulging discs but i had a constant dull

Ache in groin which is why everyone thought endo as my periods are bad and it would all flare at that time of month to but apparently that normal with bad back and discs to as when we are due on we carry extra water(!water retention) which sits on all our organs and nerves .

So it can all b very similar symptoms, i only found out coz after my lap i was still in so much pain and i got my husband to start massageing my hip and back and id get some relief and i thought “ hmmm bit weird” and i went to a osteo and she said ur hip are out, u have a bulging disc which u left so long it fused and ur groin is pulling coz ur bodies all over place also my lap scar adhesion was catching which she massaged out for me”

A year down line i have no pain!

Go to osteo every 4-6 weeks ifit flare i just go in one session and im fine.

I still have bad periods but it only 2-3 days of month. Rest of month im fine.

So i wasted alot of money on things i didnt need to.

It mayb worth u seeing a osteo first and just making sure ur back hip groin are good.

There alot about it on google about how these problem can effect periods and hormones

[luthien in reply to Lulububs]

It depends on your area as to how long the wait is; mine for the NHS in Gloucester is looking to be about 4 months just to see someone. So I went private; yes for an intial consultation it cost about £200. My diagnostic lap, with excision of endo, unsticking of organs, hysteroscopy and biopsies came to just under £3,000 but that included pre op, the surgery, the surgeon (the specialist I'm seeing) fees, the hospital room and stay, the anaesthetist fees, prescription medication, aftercare if needed for 2 weeks, and a 2 week post op. I get it's expensive but for the peace of mind, waiting times (I could book the op when I wanted it from the week after the initial consultation), the care (just seeing my surgeon and anaesthetist before and after the op) and the aftercare (being able to phone in / have an appointment included / extend sick note, discuss findings) I'm happy with it - considering I did have endo - however my family history is that all women had it and all signs pointed to it so my specialist was 99% sure it was endo, if not it would be something like a cyst.

It's personal preference I guess - having said that if I now needed additional treatment and couldn't afford private I would try as best as I could to see my specialist under the NHS - even if it meant paying private for that initial consultation and being added to his NHS waiting list.

If I moved country then I'd have to pay anyway, knowing that and I could not have medical insurance if in the UK I've started saving a bit each month towards any future costs.

[Meadowsweet11 in reply to luthien]

Thanks for your reply. Yeah that all makes sense. They have finally got me an NHS referral just this week which is hugely positive but think I might get an initial consultation with the same specialist privately to get things moving more quickly.