Please someone help me, I cant get the doctors to accept that I am still in pain after they apparently "got rid of" my endo..

[CeriM]

I have had pain where my right ovary sits since I was about 17 years old. Finally in 2013 (now being 24) a doctor took me seriously and sent me off to a gyno. I was looked at, examined, told I was too young, probed and then told that nothing was wrong. I cannot have sex without pain and my periods are ALL the time, up to 3 times a month and lasting at least 6 days; they are also so heavy, clotted and painful. I kept on going back and finally they sent me for a laproscapy and low and behold found that I had endo around both of my ovaries. I have had the endo lazered off and also had a Marina coil inserted to try and help with the pain of my periods. I know that it takes time to heal after the opp and that the coil takes time to settle but I was in a lot of pain and had constant extreme heavy bleeding. I got taken back into hospital and sent straight to the emergency gyno who proceeded to tell me that this was perfectly normal and that I was completely fine and sent me home feeling like a bit of an idiot.

Since then I have been experiencing constant pain, a bit of weight gain (which I am now trying to combat by going to the gym 5 times a week), huge mood swings, hot flushes and constant heavy painful periods. I went to the doctors several times and they all said that everything was fine and that this is to be expected. I am almost a year down the line since the opp and had an internal ultrasound done today only to be told that my coil is in the wrong place and needs to be removed and replaced. Its so sad that its taken this long to be taken seriously. However I am still worried, I dont think the pain from my right ovary is coming from the coil being in the wrong place and previously even when I had endo they missed it on the ultrasound. I dont want to have to go through it all again, being told that nothing is wrong and that its in my head only to find out a year later that oh woops yea you were right you do have something wrong.... has anyone had a similar problem to me or any pearls of wisdom? Its starting to really get me down now and I can see it affecting my work and personal life too.

I really appreciate anyone who makes it through all of that and replies, thank you so much and sorry if I sound ridiculously moody....!

[wp22]

Me too, I am in terrible pain after my lap nearly 7 weeks ago. The worst it has ever been. I was told too that I have no endo left and it's all been taken out. BUT I have heard this one before and low and behold I STILL had endo. Cut a long story short an endo 'specialist' In an accredited hospital operated on me 9 months ago and told me that I have none left. I was in pain too after that op and wasn't happy because I knew I still had endo so found my self another gyne in a different hospital. When he operated on me nearly 7 weeks ago he found and took a huge endo nodule out from by rectum which other gynae left inside. But now yet again I have been told I have no endo left. So why am I still in pain? I ask.... Apparently PoD endo is difficult to find as it gets surrounded by normal looking tissue and can easily be missed or not seen at all because of this. But I know I still have it left behind. I am so sick of surgeries and being in so much pain. It's wasting my life. I am so sorry that you are still suffering. It is disgusting that doctors haven't taken you seriously. I hate their lack of realisation. Shame on them all xx

[CeriM in reply to wp22]

wp22, its an awful thing to say but I am SO grateful that you have experienced the same thing, I thought I was loosing it, it makes such a difference to hear that we are not alone so thank you SO much for your response. I will look into PoD endo and see what I find out about that. Its just hard, I am sick of the pain, of the loss of dignity everytime my period comes on which feels like its all the time and I am sick of feeling guilty for my poor other half, its just too painful when it comes to sex or anything like that but the doctors think I am just making it up!!

I will keep you posted to see if they find anything at my next ultrasound. Did you have ultrasounds? I personally think they are totally useless, my friend had a cyst on her ovarie, complained of the pain, had a few ultrasounds and they came up clear, a few months later and she has to have her ovary removed because the cyst has enveloped it not good!!!

Once again thank you so much for replying to me, means alot!

[wp22 in reply to CeriM]

I have never heard of endo showing up on a normal ultrasound even an MRI will only pick it up if it's over a certain size. Why o why haven't they thought of making an accurate scan machine at least to detect it and accurately detect it by now, honestly the whole thing regarding this illness is just a complete sham. Endo has already ruined 2 relationships for me because it has turned me into a completely different person over the 5 years and I am extremely depressed because of it. I was never depressed before xx

[CeriM in reply to wp22]

I know the feeling all too well. I am SO lucky, my long suffering other half seems to have been sent to me from goodness knows where but he understands it all and copes with it all with very little resistance, I am extremely lucky in that respect! I dont understand however why they carry on sending us for ultrasounds if they know that they cant pick it up, even one of my doctors has said that they are pointless and that it never shows up which begs the question why waste the money and resources when someone who does need it has to wait!? I understand the depression part too, think its why I now exercize all the time, if I dont I have too much time to think! If you ever need to chat to anyone at any time you are always welcome to chat to me, its a welcome relief to have someone who totally understands where I am coming from and I feel your pain and anger about it all too so I really can relate xx

[synnova96 in reply to CeriM]

My sympathies too - having previously had surgery for PoD endo twice before. This time went to a so called 'endo centre' for lap and they said I have no endo. Since they let a specialist in urogynae do the op instead of an endo specialist I don't believe this. This is a hidden scandal - discrimination against women.

[CeriM in reply to synnova96]

synnova96 I am so sorry to hear that you too have gone through the same thing. I think that its just such an unknown issue for women. I personally work along-side the drug industry and I have seen reports that they are trying to understand the desease but that as of yet no cause or cure can be found. I think that because of this it is so unknown and as there is no real cure doctors arent so aware of it either. Its a great shame as so many women really do suffer and we suffer further because we arent believed. Its a bizarre two sided argument, from my perspective its infuriating and upsetting because I know my own body and I know how much pain I am in, I know how much it is affecting my life etc but from a medical point of view they do the tests they think they should do and they find nothing so what more can they do for me.... catch 22 I guess. I am just worried because I know these things get worse over time, I dont want it to be left only to find that actually the endo is back and its worse than before! Does anyone know how long it takes for the endo to grow back after laser surgery? xx

[CeriM]

YellowRose I applaud your spirit, especially at this time on a wednesday morning! I agree we do just need to stick with it and keep on pushing forward when it comes to treatment. I think the Endo UK just need more help, I only found them recently and subsequently found this site which has made the world of difference already but its hard because without the public's help there isnt much they can do, they already have so many volunteers and people ready to help its just a shame that more people arent aware. I am hoping to do the pink pants challenge in May if anyone else is up for it, enduk.whitefusehub.com/civi...

could be fun! Good way to raise awareness and make some money for us girls too!

I think the biggest issue is the lack of information regarding endo too.... nobody's fault really its just still completely unknown and its a horrid thing to be told that you have endo but they have no idea what causes it and no real way of treating it, not having answers is a killer for me so I really hope they make a breakthrough soon!

[CurlyWurlyAmy]

Hi there, sorry to hear you are having such a rubbish time

[CeriM in reply to CurlyWurlyAmy]

Thank you CurlyWurlyAmy, it is all a bit rubbish for everyone but I genuinely feel so much better to see that its not just me that is feeling a bit put down by it all and that we are all fighting the same battle together.... sounds silly I guess but its made the world of difference to my feelings towards the whole situation! x

[CeriM]

YellowRose - I had no idea that it can be genetic and that it is retrograde bleeding that is the problem, sounds like you know more than some of the GPs already!!! I shall definitely be looking at that American link you posted, thank you for sharing that too! Fingers crossed for a good pain-free day xx