1st Stages of testing for Endometriosis

hi - my gp told me in march 2011 she thinks i have all classic symptoms of endo, i've had my symptoms for 5 yrs but only went to her last year - i have had an ultrasound, hysteroscopy (camera inside womb), an mri and another ultrasound, which just tells them that i have very thickened lining of the womb and most recent a very large cyst on my left ovary which they suspect is a chocolate cyst which would indicate endo - i have had to lose some weight before they will perform a laparoscopy which is the only positive way to diagnose it, scans will not give a firm diagnosis.

try not to be too scared, research as much as you can on the endometriosis uk website, there is lots of facts there, the trouble is with endo is it can be mistaken for many other conditions, which is why is generally takes so long before diagnosis is made, a lot depends on how good your local hospital is and the gynae consultants that are there to be honest - i have another scan next week so they can see how big my cyst has got as they have already told me it is too big to respond to any hormone treatment, yet they suspect it is a chocolate cyst which means if it is and it ruptures it will leave more endo attaching itself inside more of my pelvic cavity - they can be so frustrating at times, but once i've had my next scan i do not intend to be fobbed off any more and will be standing my ground.

like i said, do some research, and come on here, even if you dont post just reading others who have, it just lets you see what you're feeling is all normal of these types of problems - hopefully you're scan date won't take too long to come through xxx

Hi Worth71, I am sorry to hear that you have had the symptoms for so many years. I have only been about 6months and its not been enjoyable. You have had so many scans, are they painful or intrusive? Haha dont know how else to politely put that type of scan.

I hope that my date doesnt take too long to come through, mind you, the NHS arent fast at anything so who knows.

Thank you so much for letting me know what you have gone through. Makes me feel less alone. Is scary to read about but would rather know what could be going on than be hit with it all at once.

Rach xx

the ultrasounds are not painful - they usually scan on top of your tummy and then sometimes they will use a wand like piece of equipment which can scan from inside your vagina, it sounds a bit scary at first, but it does not hurt, it gives them a much better picture than on top too - as for the infertility, like somebody else had just said it's not always the case that it will cause you to be infertile - i'm not sure if i have endo like i said, but i know i've always had problems with my periods since the day they started, i thought that was just how it was for women, i had my first son when i was 19 and my second when i was 25, i was trying for about 3-4 yrs for my second son, i never went to the docs about it though as i thought maybe it was just timing, i finally accepted that i was only going to have the one child and within a couple of months i was pregnant lol.

you take care, and try not to worry yet about it al until you know what you're up against, let us all know once you've scan date but i can assure you it is not painful, the scan room is usually low lighting too and you are generally covered up with a sheet or blanket xxx

Hi there -

First of all, there are lots of women with endometriosis who do go on to have kids, so don't freak out about infertility until you are actually having a problem conceiving (and even then, some problems can be resolved)

The diagnostic process can take a while. Essentially they will start with the less invasive procedures to rule out anything that's not endometriosis (and there are quite a few things that can be mistaken for it). Scans don't hurt, and although the transvaginal scan is intrusive, it's not painful and I actually found it really interesting because I had a great doctor who told me what was going on all the time.

The 'gold standard' diagnosis for endometriosis is surgery. This is not necessarily as bad as it sounds, and many people make quite a good recovery after their laproscopy. Once the doctors have established that it is endometriosis, they will work with you on the appropriate treatment. For some people that can involve more surgery, for others it's hormones, and there are alternative treatments (eg diet) that can be very helpful.

Endometriosis isn't fun, for sure. But for many of us it can be managed quite well, and many of us have great lives despite the condition. I know I felt quite a bit of anxiety at first, so you're not alone. This forum is a great place to come with questions and I hope you find some reassurance here.

Good luck with your scans.

Hi rh7662, I went through the same thing last year., like you, I was and still am not sure I want kids but the thought of having the option taken away from me really scared me. In the long run I am grateful to finally be properly diagnosed. I can now manage the pain much better especially, after the lap surgery. It's all really scary especially at first but once you're diagnosed you'll be able to focus on what you can do to help with pain.

Thank you so much for what you guys have said. None of my friends or my mum had heard of it before so it is kind of scary. I was told not to have a period which i found odd but I have continued taking the pill. Not that the pain has went away. Its not the infertility that scares me its as Bchic77 said its the thought of the option being taken away to have kids. I am glad I found this site, you have all made me feel less freak out mode haha so thanks all I can do is just sit and wait until i get the scan date. Rach xx

Hello

I was diagnosed with endometrosis November 2011 although i had it since i was 14-15 years old i was told it was many things before the gp said he was sure it was endo, i was sent for a ultrasound (it doesn't hurt) they found out i had pcos but they cant detect endometrosis on a ultrasound always i was told i was then told i needed a laproscopy where they found i had stage 4 endometrosis and still have endo now.

you should talk to your doctor about a laproscopy after your ultrasound if you want to be sure.

Hi there,

I have just read the above post and I am going through something similar at the moment. I have hd chronic pelvic pain and no periods for a year now- finally got a doctor to listen to me and had the ultrasound and was diagnosed with PCOS but they have said this dosnt cause the pain.

I have now been signed off work as I'm in so much pain and on different types of NSAID combinations which arnt really making much difference. The doctor said that it is very unlikely that I have PCOS and endo even though they've diagnosed one and I have all the symptoms of the other. Going back to see the GP in the morning to try and fight for an earlier apt with the gynae as I can't go on like this. Just wanted to see what your experience has been since you posted this?

Thanks,

K

Hello since posting this i had another lap and ultrasound hyge poly cysts were found on my ovaries and more endometriosis i havent had a period for over a year roughly a year and 2 months kinda loosing track of the time now its been so long i had ovarian drilling where they drill your ovaries no kind of tablets work for me after lap number 2 and ovary drilling i still have pain but just hoping that goes away. pcos can cause pain i no this because you can tell when you get that sharp diggin twisting pain on your ovaries but i was told same thing the way i got lap etc was keep visitin doc telling that the pain killers dont work you think its endo you want a lap and dont give up will probs take several visits. Im now hopeing to have a baby soon although i dont know if thats possible but being 21 now with all these problems i think its for best as i do want children and if i ever will is unknown. Dont give up on what you believe you know your own body. Sorry about any spelling mistakes etc typing on phone : )

Hi. So you are allowed to request a laproscopy after the scan results? I hope i get my scan date soon, the nhs are so slow. I wonder why it takes so long to diagnose this. Xx

Hi, I requested a laparoscopy after I'd had my scan but my consultant (Adam Magos, Royal Free hospital in London) said it was easier & quicker to start me on the "treatment" for endo rather than waiting for a laparoscopy. Estimated waiting time on nhs is 4 months. So I'm on "gnrh analogue & HRT" which puts you into temporary menopause and is supposed to stop the hormones that feed the endo and makes it go away really quickly. I hope so!! But you can only have it for 6 months, just have to hope it works and then the endo doesn't come back.

Good luck xx

Cool. Well I am still waiting on scan date! Knowing my luck i will get the date for like 6 months from now! haha. I remember when i was suffering from migraines it took ages to get an MRI! So the pills put you into menopause then when you stop taking them you are back to .... normal? Good luck to you too xx

i'm not positive but i'm sure that when you are referred that you have to be seen within 18 wks, whether this has changed i don't know - all my referrals scans, or gynae it usually been an appointment within 8 wks, but this will vary depending on where you live - at least you have your gp on side, and it does help to have a good gp xx

You can have it as a nasal spray daily or injection once a month. I started nasal spray 3 months ago but was still getting pain & periods. My consultant said it wasn't working and changed to injection which I can get from my GP once a month. Working so far. You have to take HRT pills with it to stop you getting symptoms of menopause. Yes, you go straight back to normal if you stop taking them. Hopefully it will make the endo go away and stay away!!

I hope you get your scan date soon - the nhs have been absolutely brilliant with me. Given me loads of pain relief on the many trips to a&e when I've been in so much pain I can't function and they've kept me in for however many days it takes to calm down. After seeing practically every person on the gynae team I got to see the consultant who put me straight on this treatment. I have been taking strong painkillers on a daily basis (so no work and no alcohol lol) but hoping to stop taking very soon as the injection should work very quickly.

xx

dont think i would like to go through that at 22! haha.

I am pleased to hear that the NHS are good with you. I hope that they are the same with me xx

Hi, I went for my first gynae appoinment a few weeks ago and they tested for PID and put me on antibiotics too. They haven't worked for me either. But the gynae discharged me anyway without a follow up appointment or anything, also during the appointment the consultant didn't listen to a word I said about any of the main symptoms I am having. Luckily I have complained and have another appointment but not until mid August!! Think I am going to phone back and try to get seen sooner as the pain seems to be getting a lot worse.

I like you, am 22 and am having a similar worry of, what if I don't have the option to have children? with being re-refered I think I am going to have that first appointment all over again but hopefully this time the consultant will listen to me and I will actually get colser to finding out if I do have endometriosis or not.

Hope that you get your apppointment soon and that things get cleared up for you. I feel relieved that there is someone else who is having similar worries and feelings to me.

Good Luck

Vixi

Hi Vixi. I am hoping to get the appointment soon. The pain was unbearable yesterday morning...well 5am lol. I am getting referred for endo, came back that I dont have PID. Im sorry the consultant didnt listen to your symptoms. Your appointment will probably be before mine! NHS takes ages. If you want, you can message me and we can talk im sure there is a message option on profiles :S

I hope you start to feel better soon

Rach xx

I am also waiting to see my GP for a second referral as im not confident with my diagnosis..the consultant only seemed interested in one symptom which drove me mad and told me i couldnt get constipated from having it??? urm not what iv seen online thank you...want to get it sorted as its not nice..

Rach arent you supposed to be seen within in 18 weeks of your referral....xxx

My GP told me that you can get constipated from it and all sites say that its a symptom. Hmm very strange the consultant said otherwise. Em...not sure how long it takes for the referral to be honest. xx

Scan on the 6th July. No idea how im going to manage to keep upto a liter of water in my bladder! xx

thats the bad thing about the scan you have to have a full bladder and man its quite painful lol..what time is your appointment? mine was about 11am so i had to try and drink a bottle of water in about an hour which was quite hard cause i wasnt that thirsty lol....hope it goes okay x

its at 3 so i have all morning to drink water but i have a weak bladder! haha this is going to be interesting! xx