What next?

[MovingCastle]

Hi all, I had my laparoscopy yesterday, and after being told they were pretty damn certain I had endometriosis, they didn't find any during surgery.

I am absolutely gutted, just because it now feels like I'm back at square one, so what is actually going on with me? I have no idea what I'm supposed to do now, I still have all the symptoms of endo but nothing to show for it, is it possible they missed it? Or what else could it be that they wouldn't be able to find through surgery?

I just don't really know how to cope from now, and what direction to go in next. Please any advice you have, or your own story if this happened to you, I would love to hear. I'm feeling really really down and just defeated.

[Hidden]

Hello dear,

I know how you feel, I have the same situation as yours. My gynae was sure that I have endometriosis (since I have all the symptoms for more than 15 years!) and last week I had a laparoscopy and nothing was found! Only a small adhesion on my uterus.

Now I am going to see my doc again to discuss this issue.

Did the gynae who performed your surgery an endometriosis specialist?

I hope you find relief and answers as soon as possible.

Best of luck xx

[Jessybessy]

Hi,

I know exactly how you feel. I had a lap in 2009 after they were convinced I had endo and they didn't find anything, so I carried on dealing with all the symptoms thinking that it must all be in my head. This year, my and my husband have been struggling to conceive for 2 years and I was referred for another laparoscopy this June, this time by a fertility specialist. She found endo in lots of places, mostly in the pouch of douglas, which explains why I had pain with bowel movements around the time of my period, plus I also found out I have issues with my fallopian tubes. I felt defeated the first time round and, after trying a couple of times, I gave up asking for help because I thought they would shut me down and didn't seem to believe me, but now I really wish I'd pushed harder for more testing and further answers because it's taken me 10 years to get to where I am today and my issues still aren't resolved. If you know in your heart there's something not quite right, don't give up! xx

[Anastasia17 in reply to Jessybessy]

Hi Jessybessy. Like you, I have endo on the Pouch of Douglas and I also have bowels problems, like reacting to food. Forgive me for my ignorance, but what is the relationship between the Pouch of Douglas and the bowels? How a Consultant would not know? Thank you.

[Jessybessy in reply to Anastasia17]

Hi Anastasia, I'm not really sure to be honest, but I believe it's because the pouch of douglas is the wall between the womb and the bowels/rectum and the endo is worse at the time of the month so it's more painful when you go to the loo, my consultant said it would have definitely been the endo causing the pain. I have bowel problems too, and before my surgery I used to get pain like a knife up my bum whenever I sat down around the time of my period. I have had it a couple of times since the op, but I do think it's improved a bit and I guess I may not be fully recovered inside yet.

[Anastasia17 in reply to Jessybessy]

Thank you for your reply. It takes time to recover from these surgeries, it's not always easy. I have been told that I have endo on the Pouch of Douglas but the Consultant doesn't understand why I have pains on the lef bowel and sometimes also on the right bowel. I was simply told I had endometriosis in January, which was completely new to me. Consequently, As I was completely unaware of this condition, we never asked the right questions, such as what is it, where is it located, what grade is it? After the lap in September last year, My head started having suicidal thoughts by which I was completely confused as I do not have a bad enough reason to justify such a drastic action, even the cat is not misbehaving! Iwas in a lot of pain, had GAD, went int depression, it's been a long winter not knowing and not understanding what was going on with me. Originally, I thought it was the perimenopause, but even so it was a bit extreme. So, Ive done my research, I don't know where I would be today without this support group, it has been a steep learning curve. Due to reaction with food, I have followed the advice kindly given to me by the ladies and I am now gluten free, dairy free, soay free, chocolate free, caffeine free, beans free (which I reacted to 12 years ago) and I also avoid tomato puree as it gives me cystitis. My Consultant doesn't think that the endo is advanced, hence I was left to cope, he wasn't expecting the level of pain I have been in. However, to his immense credit, he is now referring me to an endo clinic and Also to an immuno specialist, its a shame that I have been through so much on my own and we have wasted 1 year. The support from the GPs is beyond awful as I was told in February, after and during a flare up and I was really ill, his highly compassionate words were: 'For endometriosis NOTHING CAN BE DONE'. The nurse told me the same 2 weeks later, but in adding that for Interstitial cystitis, NOTHING CAN BE DONE and for the perimenopause, as I have a history of breast cancer in the family, NOT MUCH CAN BE DONE. I fell very confused by the whole thing and the system and still ill. So I went online, bought books, cput my story on this site, and we have fought with the GPs. I also realise that they have blocked my medical care for the past 7 to 10 years, this is what doctors do these days. I have received a lot of help and support and for this I am a better person, I am fighting, getting better. I am also extremely lucky to have a very supportive and patient husband who understands what I am going through and has nurtured me back to my normal self. I am perfectly aware that not everyone is as lucky as I am. I wish you to recover well and to take good care of yourself.