Dismissed... even after confirmed lap!

Argh!!!!!! Just finally had my 1st appointment since my lap in october and before I was discharged told I had endo and next option was prostap. .. now just been told (by a different doctor,not the one who done op) that although I do have endometriosis, the lesions were so minimal that there is NO WAY it could be causing my symptoms and to go back to my GP and ask them to investigate into 'something else' ... "you just have nasty periods" (even though my symptoms are daily problems and not just during period). Anything to treat me will only be a short term solution so the last resort is the Mirena Coil as it lasts longer and it's something I haven't tried. Other than that to come off all medication and contraception and see how I am 'naturally' ... I want to scream. I was under the impression and have been told by otgers that the physical size of endo areas gas no correlation to the severity of symptoms? Is this not the case? My cousin was in the next room at the same time being told by another doctor that they have now discovered that patients have bad symptoms, no obvious endo with lap but when MRI scan is done endo can be seen deep and growing from the inside out rather than just outside on tissue...has anybody heard of this.

Feel like whole thing is in my head and I'm back to square one of wondering what the hell is up with me!!! Can't stop crying and can't help feeling like my daily life will never improve!!!!

P.s any mirena coil advice?

9 Replies

I feel for you as I had the same experience. Had a lap confirmed endo 'minimal' follow up was told I shouldn't be in much pain and to just start drugs to shut down ovaries! I was so upset as I thought I would finally be looked after. So I booked in with a private guy in yorkshire (pm me for details) turns out it wasn't minimal but extremely widespread. I had total peritunium excision 8 weeks ago so am still recovering so can't really comment on the results yet. I must say though if you possibly can you need to see an expert. If I had believed the Dr on the nhs that I had 'hardly any to worry about' I would be no further forward! Good luck stay strong and message me anytime xx

On the day of my lap I was given his notes that said I have minimal patches of endometriosis on the right side of my pelvic peritoneum (in the exact spot where I was pointing to the pain for past 8 years!!) And that the next stop was to use Prostap injections to shut down my ovaries. So today I got to the clinic expecting that and was told by his junior that this was not the case, at the age of 19 I was too young to have prostap due to its risks and side effects and then told the above?? So confused I feel insane :'( sorry to hear you had trouble too, as I said I'm only 19 and doing a low paid apprenticeship so sadly going private seems impossible :/ don't know what else to do. May request another appointment with another doctor but have waited 3 months for this one and 8 years for my first referral so can't imagine will be much use :( xx

Welcome to our world, it is no fun here. We are constantly being told it's in our head, because of the pain correlation to the amounts of endo they find. It's true, some women with stage 4 where it's everywhere and they have no pain. Women with stage 1 can have super severe pain. I have stage 3 endo plus suspected adenomyosis. I have near everyday pain PLUS period pains when it's that time of the month. I have gone through so many dr.'s before being diagnosed (7 years worth of pain). I have had to laps done. The first one the Gyno couldn't find "anything to cause your pain, it is all in your head" About 3 years later, guess what. They found the endo that I am sure was there all along. You may want to find a new dr. One that can work with you.

I have yet to try the mirena coil, as my body doesn't tolerate foreign objects. I am now being told by my Gyno that I need a hysterectomy to help with the endo pain. Umm, excuse me? That isn't going to help all those tiny uteruses all around the inside of my body. It just kills me that Obgyn's don't know much about a reproductive disorder that is so incredibly painful and keeps us from living life like we are suppose to. I feel for you, I really do.

Don't come off your hormones without taking a planned approach as it could make you worse.

My dr has also said that endo can be underneath and not easy to see.

I think you need a better specialist.

Sorry to hear about what is happening and I hope it gets better. X

Sorry to hear you've had such a bad experience with your doctor. Don't accept what you've been told. I was told I have reasonably minimal lesions in just one area but my symptoms were disabling prior to treatment and even on treatment I am not symptom-free. I am lucky to have a very understanding GP but have had previous GPs tell me I basically need to toughen up and stop complaining about 'bad periods'. Perhaps you could print off some information about endo and the fact that symptom and lesion severity are not correlated and take it to your doctor. I am on the depo plus norethisterone plus tranexamic acid and I also take lots of vitamins and supplements which I am surprised to say actually do make a very big difference on top of everything else.

Best of luck and I hope this gets sorted for you. Not being on treatment just isn't acceptable!

This is just typical of many gynae and GP responses to endo, I'm afraid. You will have to make a nuisance of yourself until they do something to help you or refer you to an endo specialist - there are plenty who work under the NHS as well as privately. You have probably been refused Prostap as it can cause thinning of your bones and as you are so young you may not yet have enough bone density to start with - as you get older they are more likely to give you the injections, but really they are only a short term measure as they are pretty nasty drugs (they are meant to treat prostate cancer). Other than having excision surgery to remove the endo, your treatment options are mostly going to be going on the Pill back to back, to limit the amount of periods you have, or the Mirena coil.

Unfortunately ... that was the endo specialists opinion :( thanks for advice xx

Doesnt sound like a very good specialist to me!

Is there any way you could get the money together to just go and see an expert? If you could get your lap photos he could interpret them and give you your options? If you need an op maybe you could try for a loan? Friends family? Another option would be for you to join EndoMetropolis on facebook. A top retired endo expert regularly looks and interprets Lap photos for ladies on there. It's a great page for help. Good luck honey xx

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