Endometriosis UK
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now what?

really really fed up now, had a lap and hysteroscopy on Tuesday, nothing abnormal found, tissue taken for testing, testing what?? Mirena coil inserted to stop periods. I just don't know how I can go on and on with the horrendous pain and absolutely nothing wrong with me...it's just horrendous. I cried so much when the consultant came round and told me all was fine...I should have been pleased but I don't imagine this pain that knocks me off my feet every month so how can there be nothing wrong...this is sooo rubbish :(

6 Replies

Hi..karrijon I understand you because we are the same I went to my GP last nov.2013 I told him that I had a feeling that cyst I have lots of pain you he seem that he don't care he said its a normal to have cyst many woman's have cyst but I think he don't understand my pain its not a normal I know my body, he set me an appointment but 4 weeks because christmas will come I can't wait for that day, I went to private for have ultrasound yes I have 10 & 7 cm cysts endometriomas, I know I have stage IV endo because of pain it is very painful I think even doctor don't understand the pain they will always said its FINE etc, but we know our body its not OK.. I waiting for my surgery again :(


I do sympathise with you and the awful pain.The samples will have been taken from your womb and pelvis to check for adenomyosis( in womb) and endo and also to rule out anything malignant-it is standard procedure,so don't worry.The annoying thing about endo is that it can go inactive and also if a surgeon is not an expert can easily miss it.You can also just have a tiny nodule or plaque or endo,which can be very well hidden and this can cause immense pain.Others have stage 4 endo and have no symptoms -like my sis in law.My first 2 laps were done straight after coming of long term pill or depo provera( each time the endo pain was well controlled,as the endo will shrivel away as long as less oestrogen and no periods to make it worse every month) But each laparoscopy they said they only found dense adhesions but endo,if it was there couldn't be seen.I was then put on Decapeptyl as a trial to see if pain went and it was miraculous,so they have treated me for endo since.My 3rd lap was an emergency after burst cyst and only a year later from seeing no endo,and I have grade 4 endo with basically everything stuck together.If your pain is coming from womb only then there are certainly plenty drugs and pain killers to help.

Do not loose heart and keep going back to gp with the pain and if you are not coping go to A and E.I ended up in A and E so many times in one year that I was eventually re referred to Gynae.Hopefully you will have a follow uo at hospital -if they try to discharge you say you are not happy and will put in a complaint that they are not helping your pain and there are lots of things that can be done to help painwise,though the only cure is to get all the endo out.

Type in adenomyosis in the seach box,as there is a lotof excellent info on this -it is not endo( endo is outwith the womb) but an entirely different condition in the muscles of the womb.Both can cause immense pain and you can have both,or just one.

It is the whole frustration of being in soo much pain ,yet told nothing wrong,when pain is a symptom of something not right!I was told at age 18yrs( am now 48) that my monthly pelvic pain was just normal part of being a women and why it was called a curse!By a consultant ! I was also told to take a year out of uni,as my pain was stress related.Actually I was very happy and not stressed at all.At least I was put on the pill by my GP and this made the pain bearable for the next 10yrs,but I was not formally diagnosed till after my second child.

Sorry,a long rant!


I completely sympathise with you. I'm in pretty much the same situation. Whilst you are relieved that nothing has been found its also another door that has been shut and I know I feel as though people think I'm making it up. I'm not one to complain about being in pain so I my own worst enemy. I don't know if its reassuring or not but I've had messages of ladies saying it took more than one lap to find endo. It's such a hard thing to diagnose. I'm going to have a follow up with my gp and I've decided I'm going to keep a pain diary and go back in 6 months and show them. You definitely need to tell them you're not happy.


I feel exactly the same, like a hypochondriac. I had my first lap a year ago and about to go back to consultant to find out what next steps are. After my first lap i thought i had wasted everyones time but the pain has only gotten worse. We cant give up x


Thanks ladies, I know it can take a long time for endo to be found. I had a laparoscopy back in 2009 when I was suffering with unexplained pelvic pain, I had never even heard of endometriosis before. The lap was negative and I was discharged from gynae.

Over the years everything has got so much worse, I hurt my back in early 2012 and was completely laid up in total agony for days, had to have an ambulance to A&E etc. I then had the same problem 3 months running and it happened each time I was ovulating where I had excruciating pain in my back and hip and taking morphine etc. The GP put me on the pill to see if it helped and it did but the pill didn't agree with me.

The pain on ovulation continued but I controlled it with strong painkillers, had another referral to gynae who dismissed it as 'the pain that women have to put up with' as they get older. I am only 38!! I have had 4 children and they are spaced over the last 18 years so I am convinced that pregnancy and contraception between them kept it all at bay until a few years ago.

I finally found an understanding GP who was sympathetic and actually raised endometriosis as a possibility after the pain had got worse and worse and was continuing through most days of every month and I was (and still am)bleeding from everywhere on my periods. I got this referral to a lovely sympathetic consultant and I though this was it I would finally get some answers. He tried my on Zoladex which I couldn't tolerate at all as it made me suicidal (I have a history of anxiety and depression). So we got a laparoscopy booked and I really thought this was it...I just want some answers. So the lap was negative again and I just can't believe it....how can a person experience all this pain and then when they go in there they find nothing????? I really don't understand.

He is going to see me as a follow up so thankfully haven't just been discharged this time and I guess I will have to see how this Mirena works out but I am already having major cramps and bleeding and have only had it in for 4 days!! It is so nice to be able to share all this with people who understand!! My husband is fantastic, we have had no sex life for 2 years and he's still here through all the pain and misery. My family on the other hand think I am a moaning whinging pain in the backside! So just thank you ladies for listening and caring xxx


i am still waiting for them to give me a scan .. but already had ultra sounds and all sorts of tests and nothing found ive been back n forth to drs and hospital and still no answers dr thinks its endometrioses and so do i but not been diognosed yet .. but im in pain nearly all the time its usually 2 weeks before im due then for just over a week when i am on so i have less than a week pain free its horrid but they seem to be brushing me under the carpet alot and i know what you mean as when they told me all my tests was fine i cried aswell as i wanted answers to why i am in so much pain not oh tests are fine so you can go home now :/


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