What do I do?

[Rubyjune25]

Im currently seeing a gyne and they keep prescribing me different types of contraceptive pill, which aren’t working. What can I do, I’m in constant pain and they say it may be endo but they suggest not doing a laparoscopy because I’m 18? I just want the pain to ease and them to help, any advice is wanted.

[Chrysta123]

Hi,

I had the same thing when I was finally taken seriously (I was 19 at the time) and told I was ‘too young’ to have a lap - to be honest I really did not want an operation anyway so let them use that excuse but if you do really want one then you have to just push for it. Now at 23 I have had my first lap and hopefully my last lap as I did not have a good experience, but I did have to start the fight all over again to get refered back to the hospital and then be put on the op list and in the end I had to bring the state of my mental health into the equation to get that far!

Have they put you on any pain medication or any other tablets (I was put on a tablet to make my period lighter at one point but all it done was made me ill) to try and help with the pain?

You could try finding an endo specialist, I had someone tell me about this website: bsge.org.uk/centre/ but my gp straight up refused to refer me to any of the places I found here but you might have more luck than I did

[GrittyReads in reply to Chrysta123]

Hi Chrysta, (Sorry this is so long).

Just some info I learned via circuitous routes.

GPs (are supposed to) follow a very strict 'official' protocol, for the diagnosis of Endo, and particularly for referring patients to the extremely specialist 'BSGE' Clinics.

First there 'has to be' a diagnostic laparoscopy. If you insist that the lap should only be strictly diagnostic (which in my opinion is the best option) they won't remove what they find, but if there is anything they find that is at all treatable/removable by them, they would refer you for a second lap, with them, to have it removed - and with luck you will have a team better at the removal (2nd) lap, than the more purely diagnostic teams.

A lot of general laps where there is removal of the Endo, seem to go wrong, with the Endo coming back quickly - and often worse - because the gynaes doing the general laps and removing endo tissue, are not skilled and experienced enough to remove it all, properly. Also, they often do not find all the endo that is in difficult to access/view places. Also, if they try to remove Endo which is in dodgy areas (eg on the bowel - which 'really' should be left and referred to the specialist Endo surgeons in the BSGE Clinics) it can be dangerous and/or can make things much worse: general 'lap' teams should not remove such endo.

The teams in the BSGE Clinics are the absolute specialists, who have the skills to search all the difficult to access areas, who recognise all the different types of Endo tissues, and who work with bowel surgeons (etc) on hand for difficult surgery. But this is so specialist that 'yes' … the only women referred to them are the ones that have difficult Endo in difficult places. Sadly - for you - your GP is following the protocol and not referring you to a BSGE Centre, presumably because your lap did not indicate that your endo would be too difficult to remove or diagnose and not in dangerous areas - eg the bowel.

NB** Things are also getting much worse for woman with endo at the moment, as the NHS is so short of cash and staff are in short supply or overworked … plus Endo and other women's issues are (and have always been) much lower down the pecking order.

I first had a diagnostic lap in my late 30s, after years of controlling the pain with the pill. They did not remove the endo, and recommended continuing with the pill, or a mirena coil. However, my cycles were no worse after that - and later experience suggested that 'bad' removals at laps definitely make things worse. I had a 2nd lap in my 50s when I had been made to stop the pill. The Gynae partially removed the endo tissue, without me realising he was going to, and after just 2 months pain-free, things got much, much worse with every period. At this point I saw a gynae privately and he recommended a Mirena coil - which was done under the NHS. This time I was fine and the coil saw me through the Menopause.

I don't know what to advise, but you are unlikely to see a BSGE team without more info from another lap. Maybe try progesterone-only pills, or even a mirena coil, if surgery is refused, or you don't want another diagnostic lap. Or see if you can find a respected Gynae to see privately, who can advise: cf NB**

[Chrysta123 in reply to GrittyReads]

Hello,

In terms on the BSGE referal I only asked my gp for that when I got desperate as they would not even refer me back to the local hospital and I needed something (I didn’t care what it was) done to help me as I was suffering with depression because of the whole situation - I had been fighting with doctors to take me seriously for about 6/7 years at this point, so I was just passing on advice that a few others on here had given me to try and help the person who made this post avoid the years of being told they are being stupid and there is nothing can be done that I went through, I hadn’t had a lap when I asked my gp to refer me.

Eventually they agreed to refer me back to the hospital and I am now just over 5 weeks post lap they did remove endo at the same time along with adhessions 1 of which was on my bowel, but the doctor who spoke to me after tbe surgery literally said ‘i don’t know but this will probably only provide relief 6 months’ (which I already knew) and walked off when I asked what could gave caused the adhessions seeing as she had asked me if they could be from a previous surgey which they couldn’t I had never had surgery before! Nor do I ever want it again, I had the lap purely to be taken seriously and have a firm diagnosis as I couldn’t take not being taken seriously anymore and it affecting my mental health so badly

Maybe what you have said will help the person who made the post though, I don’t want any more surgery or referals

[GrittyReads in reply to Chrysta123]

Hi Chrysa,

Sorry for all you have been through - and that I misunderstood and 'went off on one' a bit … (the way women and Endo are treated annoys me so much, as it is definitely a false economy to fob us off, or give us the wrong treatment … repeatedly!).

I do hope you have some relief post-op, and that it lasts as long as possible.

Plus, I really do recommend the mirena. A lot of women have them inserted without anaesthetic. Also, it is good to have one before the effects of the lap 'removal of endo' wears off. As well as stopping new Endo it could stop resurgence on the removed tissue sites.

Take care.

[Chrysta123 in reply to GrittyReads]

No problem, I wish I could have read that years ago as it would have been helpful info! I do agree with that the way we are treated is wrong though and really annoys me too

Thanks, fingers crossed but even if I don’t I know I’m not going insane so that is something haha

I have heard so many horror stories about the coil I am very put off getting it in, but maybe will look into it again thanks

You take care too!

[Linley]

So sorry to hear of your pain -I started Endo symptoms aged 21 but did nothing about it until further symptoms revealed themselves in my 30's. By that time I had private health through my company insurance and had a Lap so pleased I did.

Now back to you Rubyjune it is unfair for your Gynae to say it maybe Endo as you are in so much pain only a diagnosis Lap would prove one way or the other and then proper treatment for the eventual diagnosis can begin. Speaking as a lay person I do not understand why you can't have an op because if you had say appendix trouble they would give you an op what ever your age, does anyone know?

My experience of Laps have been good, done by less evasive key hole surgery (I admit that you are sore for a few days after). Yes, if its Endo it can build up again so a 2nd Lap to tidy you up maybe needed, but in between that time your Gynae may prescribe a progesterone based pill (this is not a contraceptive pill) to dampen down the Endo, and a non steroid pain killer that targets period pains. I am sorry but I have not experienced a NHS Lap but a nurse I know said that in our local hospital the wait for ops is about 18 weeks or longer this is because the referral of patients has easily double, and they do it by keyhole surgery(quicker healing time) also I know that my Private Gynae preforms ops in my local NHS hospital as do most in the Private sector. If you are still wondering what to do for the best speak to PALS they will help you. Good Luck and let us know how you get on. x

[Lofty1589]

I’m only 19 but said that I wanted a lap as it is the only sure way to diagnose. I’ve learnt that you do have to push for things to be done a lot - but it worked in my favour! I’m now waiting for a diagnostic lap.

Hopefully you’ll get some answers soon xx

[ali_cupcake]

So sorry to hear you’ve been having problems with your consultant! Your age should not be an issue. I’m only just 17 and my consultant is a specialist in paediatric and adolescent gynaecology, they do laparoscopic procedures on girls as young as 12! I’m having my first laparoscopy on 23rd April. Sometimes you do have to try and push to get answers which isn’t right at all but unfortunately it’s the way it is. I hope you get some answers! X