Possibly Endo?

[Emma-louise]

Hi ladies!

I've been referred (finally!!) to a Gyne about my periods. Im 22, and in the past 4/5 years suffered excruciating pains from them - to the point of being sick once!! I have to take a ridiculous amount of painkillers to help, and have endured being awake at 1am most nights with period pain for the first 3 or 4 days of my cycle!

They havent always been this bad, but i have been tried on several different contraceptive pills and am currently on Micronor. My family planning clinic told me to double dose this to ensure i didnt have a period and to relieve the pain. This worked up until about 8 months ago, when the pain came back and i was having ridiculously heavy periods (changing a super every 2/3 hours!). Now im struggling with periods every 2 weeks, sometimes heavier than others, and always with pain. My moods are terrible and i still have another 3 weeks until my appointment.

I guess i just feel like im alone. After reading other people's troubles with Endo, i just dont see thats what i have.

I just hope someone can at least tell me this is all sort of normal.

Thanks again!

Emma x

[nette30]

Hi Emma-louise! Sorry to hear about what you're going through. I am 20 and have very similar symptoms to you. Have you been to the GP/gynae about what you're experiencing? If not it would be worth going to have a chat with them, especially if you're getting periods every 2 weeks and are in pain. There are lots of lovely girls in this forum who you can chat to and who understand how you're feeling so you are not alone Also feel free to PM me anytime you like if you want a chat xx

[Emma-louise in reply to nette30]

Hi Nette30! Yep been to my GP for the past 4 or 5 years, and have finally seen a doctor who has referred me to the gynae! I have my appointment in about 3 weeks.. just really nervous about what to expect. After reading other people symptoms etc i feel like mine is nothing compared to other peoples, even though i know this is no where near normal - ive just seemed to have coped with it now so its normal for me. Glad im not alone though it definitely helps. Thank you x

[nette30 in reply to Emma-louise]

I have a gynae appointment in 3 weeks too! I've seen 2 gynaecologists in the past year and both of them have been lovely so don't worry about that. The best tip I can say is to really make it clear to them how much your symptoms are affecting you. I haven't been very good at doing this myself the past 2 times but if you maybe write a list before you go and that way you won't forget anything. I'm going to try and be firmer next time I go! I know what you mean, it's easy to compare yourself to other people's stories (I do it too all the time) but just remember that even though everyone is affected differently, it doesn't mean that one story isn't as serious as another. X

[Bokkie]

Hi Emma, I had the same symptoms as you for years and years (I am 47) although the contraceptive pill kept things under some sort of control to a degree. Then after my 3rd child I couldn't go back on the pill and that's when my symptoms got even worse! Super plus tampons changed every 2 hours plus a sanitary towel day and night. Felt really unwell and became severely anaemic too. Had constant pelvic pain all month. I was treated for painful and heavy periods for 10 years with tranexamic acid tablets, then I underwent an endometrial ablation op in 2011 which cured the anaemia as my periods became a bit lighter (although they didn't stop all together). However, I was still getting pelvic pain and feeling generally crap. Then this year I was found to have a raised CA125 blood test reading (over 35) and an internal scan found a black dot on one of my ovaries so I was offered a laparoscopy early this year. I was diagnosed with severe stage 4 endometriosis and told that it was everywhere! I am now having Depo-Provera injections. No periods and much better than it was before! I read recently that no woman should suffer excruciatingly painful and heavy periods and should not think that it is normal and to be put up with. If I were you, just hang on for your appointment if you can and ask about different treatment options and tests or a possible referral to gynaecologist who specialises in this. Hopefully you can get the right help and won't have to suffer as much. And believe me YOU ARE NOT ALONE! I hope you get this sorted out soon. XXX

[Emma-louise in reply to Bokkie]

Hi Bokkie

Wow it sounds like you've really struggled with yours, its so good to hear that you're finally sorted though!! Can i just ask though, can the Gynaecologist access our GP records, or will i need to take them in. My memory is absolutely awful and so i cant remember which contraceptive pills ive been on (ive been on a fair few) and how long for, and i know i will need to let the gynae know so we can cross it off the list if it is endo.

Thanks

xxx

[Bokkie in reply to Emma-louise]

Hi Emma-Louise,

I certainly didn't have to take in my records. I did get asked a lot of questions though but, like you (and I am probably worse because I am a lot older!) I couldn't remember everything. My problems had been going on for at least 20 years too! I would hope that your details will have been already sent through to the Gynae dept or that the doctor will be able to access them anyway. Don't be fobbed off though. Remember though the only way to know for sure if you have endo or not is to have a laparoscopy. The first Gynae doctor I saw said he didn't think I had the symptoms of endo and sent me away and I had stage 4 Endo!!! Good luck! XXXXX

[Emma-louise in reply to Bokkie]

Hi Bokkie,

Thanks so much for your help, i shall make sure i put my foot down for a change and finally get this sorted.

Thank you!

xxxx

[faffy73]

Hello!

Whether you have endo or not, painful irregular heavy periods isn't normal. You are in a positive position of having that appointment booked to start the investigation into the reasons why it's happening to you. It could be endo, as I too suffered in the same way as you are currently, but try not to worry you're on the right path now. Whatever it is, waiting for appointments and treatments will test your patience, and when your moods are all over the place it's even harder waiting for answers, you will get them, no matter how long it takes!

It's hard not to feel alone, but you have done something about it. To be honest with you I have only just joined Endo UK for the same reason!!

Good luck to you

XX

[Emma-louise in reply to faffy73]

Hi Faffy73,

Yep they definitely arent normal so at least something positive can come out of this, whether it is endo or not. Its definitely nice hearing the responses though, very calming! Thank you xx

[Eva127]

Hi Emma,

I also questioned whether I had endo because my symptoms were no where near as severe as some on here. I had first lap yesterday and they found some. I feel ok other than a bit tender around my wounds.

Try not to work yourself up by comparing to others, I did that and got myself overly stressed. Just trust your instincts and tell the docs all symptoms no matter how embarrassing and try not to compare yourself too much to others. One thing I learnt from this is no two people have exact symptoms, and they don't relate to the amount of possible endo either. Try to keep calm and your definitely not alone

[Emma-louise in reply to Eva127]

Hi Eva127,

Thats great to hear, im glad you're recovering well. Its definitely calming reading everyone else's replies and knowing that im not alone on this one! Would it be ok to ask what happened at your first Gynae appointment too... as in my panic i have been googling it, and im a little horrified to say the least! It would just be nice to know the routine. Thanks again xx

[Eva127 in reply to Emma-louise]

Hi Emma,

Yeah no problem, I'd not worry too much about the gyno appointment it's quite straight forward thankfully. Well that's assuming they are all the same! Basically, they asked me to explain my symptoms in more detail, she was a lovely lady and felt totally comfortable telling her. It's really important to explain everything in detail no matter how embarrassing because unfortunately it does help with an accurate diagnosis. She then did an internal examination with a nurse present including swabs and in my case a smear, as I'd never had one due to me experiencing pain I'd put it off. Once she had listened & looked, she told me she suspected endo and arranged an appointment for my lap. They gave me a date there and then, but I only found out what time the day before op.

Please don't worry about the internal exam being painful though, unless your symptoms also include internal pain such as with intercourse, then it shouldn't be uncomfortable.

I hope this helps you Emma, if you need anymore advice let me know xx