I don't know what to do anymore - Endometriosis UK

Endometriosis UK

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I don't know what to do anymore

OnlyTheBeginning profile image

I'm 19 years old and I've had severe abdominal pain for 6 months and have had no help from any doctors. One doctor told me that I may have endometriosis and gave me the combined pill. It didn't agree with me and I was put on Cerazette. The pain has grown more frequent and I'm constantly bleeding and suffering from bad headaches. I'm scheduled to have an ultrasound but have had one previously and this has shown nothing. I've also had an internal ultrasound which also showed nothing. I don't know what to do anymore. I'm tempted to come off the pill and just cope with the abdominal pain. I've never felt so low and feel as though I've had no support. I don't know what to do.

10 Replies
Tboag profile image

Go back to the doctor that mentioned endo, then ask him to refer you to a gyne, tbh you are going in the right direction if they are doing ultrasound, endo will not show up but, it rules other things out, if it comes back clear you need a laparoscopy thst I'd the only thing that can tell you for sure you do or not have endo, please don't give up and put up with it, you are young and deserve to be pain free, the longer its left the more seriouse it could become,


Hollie90 profile image


I'm so sorry to hear you're having a crap time. Similar thing happened to me, I'm 24.

Until the end of this April of when I had an op I'd been in a pretty bad way, in a lot of pain - a&e visits collapsing in pain, i just couldn't do anything, since July 2014

I must have gone back to the doctors every 2-3 weeks, at first they thought it was ibs and gave me treatment for it but nothing worked. Eventually they sent me to a bsge approved gynae. They did an ultrasound and found nothing but I begged him to open me up and when he did I was covered in the stuff and have adenomyosis. A 30 - 45 min op took 3 hours! Now I have access to a pelvic pain nurse, more treatment options and early help with pregnancy etc.

Just keep keep keep pushing. My doctors is a practice so you can see any Dr working there which was useful when one was out of ideas. If yours isn't like that try going to another doctors if you can, some as you might find, are more reasonable than others - some have bizarre outlandish ideas about endo and its sufferers! Hope you never have to sit in a room with one of them!

I did a lot of research about symptoms of endo too as I found the pain I was feeling really hard to describe but after reading what the Dr s and ladies on here had to say I could tell them exactly how I felt which was really useful for both of us.

Hope that helps a little bit. always here if you want a chat :)


Nicolahunny profile image

You have had a time of it all I had same problem as you and I kept on at my doctor till finaly they finaly refered me to gynaecology on top of ending up in hospital 3 times collapsing with the pain then got my laparoscopy done this year and endometriosis was found and they have burnt it away but four months later still In pain but you are young and have your whole life ahead of you but don't give up keep on at the doctor just like I did they will soon get fed up

nworb39 profile image

Get referred to gyne at your nearest hospital and then they will probably do a laparoscopy because unless you have a lot of Endo in one place it won't show up on a ultra sound speaking from experience I had a doctor sending me for them for 4 years telling me there was nothing wrong. They might also suggest a mirena coil I didn't get on with mine but I've heard a lot of good things about them and they have really helped control people's symptoms might even be worth asking your gp for one in the meantime because they will take it out if it doesn't agree with you (they can take up to 6 months to sort your cycle out though) but try everything and you'll find something to suit your body x

OnlyTheBeginning profile image

Thank you so much ladies! I've just returned from a visit to the doctors and told him matter-of-factly what was wrong with me. He told me to stop taking Cerazette and has referred me to a gynaecologist (finally!!), I'll still go to my ultrasound but it's a relief knowing that I'm going to see someone. Thank you all so much for your advice, you've really given me hope xx

Jodi3181 profile image

It very well could be Endometriosis. I had that and 90% of the time it doesn't show up on ultrasounds. Mine got so bad that it created a mass between my bladder and uterus which did show up on an ultrasound so I had that surgically removed. For me the Endo pains felt like stabbing pains. I had the surgery last Aug and feel fine ever since but ya never know when it will reoccur.

Nicole124 profile image


I know what u are going through! Try not coming off the hormone pills they will help with the pain, and besides the ultra sound the only way to properly diagnose Endo is a scope to go inside your belly, how they found mine pelvic scan with injection first to go into my pelvis, it was done at the hospital. Persons body is allergic to estrogen that yr ovaries naturally produce & if those are removed, cells still carry some estrogen and Endo forms lesions on the outside of the uterus eventually all around in pelvic area aggravating other organs. It's like having yr period on the outside of uterus. But only if it get's that bad not all women with Endo reach a high stage of Endo. 1 out of 10-15 woman have Endo. So many woman I meat don't have it, never had a problem & never heard of it. Like my sister!!

Don't give up, I'm 44 years old & at yr age starting at, 13 with cramps got really bad 15 until on the pill, seen doctor's they said (IBS) symptoms gave pills for infection & sent me on my way, this happened in, Canada where I'm from, here in USA where I reside, also in England where my Ex-husband is from. My cramps felt like looong contractions!! I had my good moments Praise God! & now I know why I was always looking for energy vitamins. It got really bad after I had my son I wish I could of seen by a experienced, knowledgeable Doctor to excise as much Endo possible.

Look at Lindle sight she has much good info and a website on how to find a Doctor as well as, blogs of testimonies. And (but this is me only)cause i waited till i was 38 years old I had cysts on my ovaries and fibroids ended up having Hysterectomy. Not all women have that done, some have it excised off right away with 2 or 3 opinions from other Doctors to make sure right choice for them! And then they have treatment with hormone pill, all ok. God bless u on yr short journey to Endo recovery. "if" it's that u have to get some tests done.

Princessming123 profile image

Please keep going, because one day they will be able to help and this will all be behind you. I would say you can try coming off the pill because it is not the miracle drug some doctors like to proclaim and no one should have to go through worse symptoms.

When the pain is awful go and see your doctor so that can hopefully make things more quickly happen to try and help you.

Stay Strong.

sw1996 profile image

I'm 18 nearly 19. I've had several pills and the coil .. Just had the coil out 4 months back after 11 months of constant bleeding. Now just finished zoladex injections had 6 of them. (Temp menopause injection) which had no affect, still bleeding. It's hard being young and with this as no one seems to care as much because we're young.

I'm even being told I don't have endo no more even tho in 2 of my laps (had 5 in a year and a half) they saw endo!

If you ever need someone to speak to you can PM me as I'm near your age.

Keep pesting the doctors and don't take no for an answer! Because I promise you, they will keep brushing you off xx

Dollar1414 profile image

I was 18 when my pain first started and I was on the pill, I had internal scans external scans, urine , bloods, ect and all clear, nothing, after more than a year later I was sick of the pain and I kept pushing , they decided to reffer me for a lap but said I couldn't have Endo because my only pain was during intercourse, WRONG, I did infact have endo which was removed by a specialist when I turned 20, personally I wouldn't come off the pill unless advised, as if u do have endo the pill will be slowing its growth/ controlling it kind of , as the only treatment is removal and then hormone treatments like the pill coil ect , there isn't a cure. I would go back to the doctors and get yourself reffered to a gyne , gps often fob you off, but do not give up , if anyone knows your body and when something is wrong it's you, just hang in there and persist, Goodluck with everything x

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