Struggling for a diagnosis: Hi, I know I'm... - Endometriosis UK

Endometriosis UK

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Struggling for a diagnosis

BxbyDanni
BxbyDanni

Hi, I know I'm still classed as young for when it comes to diagnosing Endo. However, I've been struggling with horrendous pain with periods since I was 13. It's gotten worse and now I experience pain outside of periods.

I had a blood test for CA125 and my levels were normal. They took me in for a pelvic ultrasound and first time around saw a cyst but then it went away the next time they looked.

That hasn't stopped my pain however. When my family member talked about Endo because she had it the doctor said I was too young for them to do anything. Now I'm just stuck here. I have no idea what to do anymore. I'm still struggling with pain and overtime it's slowly getting worse. I want to get tested for Endo but I feel like nobody's listening too me.

25 Replies
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Hello BxbyDanni

I’m so sorry to hear that you are have these problems.

Please do not settle until you have been checked because leaving this untreated will progress. All of your symptoms do point to endometriosis and you know your own body.

It took me two years for me to get my diagnosis because they kept fobbing me off, I started to think that maybe all this was in my head but I was right there is something wrong, I had my surgery in October 2019 and was diagnosed with stage 2 endometriosis.

I still suffer now but at least I have an answer as to why I get such bad pains. Please don’t give up and keep fighting for answers.

How old are you if you don’t mind me asking? Xxx

I'm currently 16 years old. I had bad pains when my period started when I was 13. It's usually in my power abdomen and lately it's been happening outside my period more on my left side. I ended up in A&E with horrendous pain in my left side and they didn't know what it was and just said to go to my go which ended me up to this point after the pelvic ultrasound with no answers. I'm constantly fatigued and my mental health is suffering. It's getting hard these days to really do anything but doctors won't listen too me. My teacher said it might be endorsed and my partner thinks it is too. The symptoms of endo do sound like what I have right now it's just again doctors wouldn't listen. My mam tried taking me for stuff like that when I was 13 and they wouldn't listen either.

BxbyDanni
BxbyDanni in reply to BxbyDanni

Lower*

You are definitely old enough for a investigation, inform your GP you want referring to a gynaecologist.

I was in A&E before I was diagnosed with chronic pain in my left side, this was after intercourse and this is what happens with endometriosis pain during and after intercourse.

Any question you have there are a lot of ladies on here that will try there best to help you.

Please keep fighting for answers and don’t let people tell you things when you know your own body. Xxx

Do exactly as Love_Yellow proposed, go to GP and tell them about this, even mention bleeding between periods, that seems to alert them. They will refer you to gynecologist and you will be able to choose one from the list, check their reviews and see if they specialise in endometriosis at all. Now depending on doctor they might need more or less convincing before surgery, either way, already from today prepare a diary. Write down how you feel every day, where is pain and how it affects your life. Write down with all details how your period looks like, how long it is and is it regular or not. With all this information they can't deny you a laparoscopy. You can do it, and I wish I had all this info when I was your age, because let me tell you it only gets worse...

BxbyDanni
BxbyDanni in reply to Setari

Sorry just a question would I have too tell the GP why I want to see a Gyno or not? Also would I have to bring anyone with me?

Setari
Setari in reply to BxbyDanni

Yes you will have to describe problem to GP, not sure about the guardian part, you might

Moonglo
Moonglo in reply to BxbyDanni

It might be useful to bring someone with you so they can back you up and ask questions you might not think of.

BxbyDanni
BxbyDanni in reply to Moonglo

Alright I'll bring my nanna who is diagnosed with endo

I’m so sorry you are going through this. My daughter stated having heavy painful periods at 14 , she had three ovarian cysts that ruptured . The pain would last for months with no relief , she would bleed so heavy for six weeks straight. Her Gynechologist thought she had Endo but they didn’t find anything. She did have laparoscopic surgery to make sure there was no Endo. She started getting lupron shots , the first one helped for one month then the other five did nothing. She had the merena IUD put in over two months ago and is finally feeling better. The first seven weeks were real bad with pain and heavy bleeding then it finally starting helping. She is 18 now so it’s been four years of hell. If you have Endo in the family maybe your parents should get you an Endo specialist .

I wish you luck and hope you get this figured out. I know how terrible it is

I'm really sorry about your daughter I hope she feels better. Thank you.

Than you. She is almost 100% pain free now.

My advise : dont give up! I was going to GP 3 years and nobody wants to listen to me... which is sad when somebody tell you that is in pain all the time. Recently i got even laparoscopy and they discharged me in hospital as : "No activ endo found" but at the pictures and she told me that it is 3 spots of endo. So they didnt bother. I went private to specialist of endo i paid 200£ but he said to me that everything shows that i have endo, he dont Know how much. I arranged my appoitment to him on NHS and i have on February, as im not afford going private( operation 6 thousand) . So my advice: keep looking for second opinion and be stubborn for your health! Cross fingers for you! ♥️♥️♥️ P/s sorry for my English I'm polish .

BxbyDanni
BxbyDanni in reply to karooendo

I ended up going for the pelvic exam and they saw a cyst and said it might be that but then I went again and it went then they said I might have a problem that produces them or something hut wouldn't diagnose me with anything and discharged me with nothing so I have to go back and ask for a gyno this time this is so frustrating if they just listened to my mam in the first place when I was 13.

karooendo
karooendo in reply to BxbyDanni

Find out in the internet where is specialist of endo in your area and then tell your Gp that you wants to go there! I was fool that I didn't know that I can choose doctor that I want to go! You can choose because you want diagnosis ! To NHS! Good luck! 💋💛

Hi I am having this same problem! It's horrible to think that they will not listen to us !

We know our bodies and we know when something isn't right !

All I can say is keep pushing them ! I am know under the gynecologist and hopefully in the process of finding out what is wrong .

It bad how much we have to fight to get some answers!

I hope you get heard soon and hope they can help with your pain ! X

BxbyDanni
BxbyDanni in reply to Vanreid9

Thank you and I hope all goes well for you too

Vanreid9
Vanreid9 in reply to BxbyDanni

Hope it all goes well for you too ! Xx

It took me 7 years to get a diagnosis with repeated hospital stays were they told me ot could be various things with no avail. Finally I had surgery this week and low and behold I had endometriosis. I wish I had known about it sooner. As I had so many signs and theh tested me for everything but endometriosis! Good luck.

BxbyDanni
BxbyDanni in reply to Alicejrh

Thank you and I hope you're doing well after your surgery.

I agree with all the other ladies that you need to go back to the doctors and keep pushing. I was the same as you started my periods very early 9or10 and through high school I dreaded my period as I was be a complete zombie with the pain. They done a scan and found a cyst but didn’t do anything as it was small. The best thing I done was go on the pill marvelon. I know it doesn’t work for everyone. The pill done wonders till I was 25 and then the pains started creeping in. I was referred back to the gynae dept and scanned and this little cyst has grown a lot bigger so they had to operate. Have you had an MR scan or CT scan? I am now 35 and recently had a ultra sound scan which picked up one cyst but I was referred for an MR just because they couldn’t tell what cyst it was and found a mass on my left pelvic side. Only for that I wouldn’t have know..still having tests done to try and confirm what it is or I may need a biospsy. It really makes me sad how many women are in pain and suffering and it’s like our voices are not being heard when we know there is something wrong. I hope you manage to get the pain sorted and feel free to contact me if you have any questions that you may have x

BxbyDanni
BxbyDanni in reply to Jonesy84

They only did a ultrasound on my pelvis and then just sent me on my way. Too here I am now with no answers or anything they said to me, "You may have one of those problems that produce cysts" but never diagnosed me specifically with anything. I go so fed up and said I'm not going to the gp again but my nanna is concerned and so is my partner and even my college tutor said I need to go back and get tested for endo.

Yes definitely go back. I know it’s hard and frustrating but you know your body and what pain you are in. If you can see a different go if you felt the last one wasn’t listening and it a good idea to have some else there so they can support what you are saying. Good luck hun I hope you feel better after your next app and they is a better plan for you

BxbyDanni
BxbyDanni in reply to Jonesy84

Thank you

1) The CA125 IS NOT a diagnostic marker for endometriosis. There are many many women with deep-infiltrating stage 4 endometriosis finding themselves with normal levels of CA125.

2) Age doesn't matter. You can have very advanced endometriosis in your late teens as well and there are surgeons in the UK willing to work on teenagers (and highly skilled and experienced ones too).

3) No one will listen to you because you didn't turn to specialised surgeons yet. All other physicians are NOT trained to treat nor recognize endometriosis. You need to seek the help of a specialist ASAP

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