Suspect Endometriosis but I'm not sure. Help!

Posted , 5 users are following.

Hello ladies! I am new to this forum and I am so glad I've found it. I've already read a bunch of different posts and I'm learning so much! 

I come from a long line of women with gynecological issues. My mom had uterine fibroids and only one working ovary, her mother had fibroids, and my great-great grandmother died of ovarian cancer. I know most pelvic issues are not inherited but I know you can have a genetic predisposition to them. 

I got my first period 11 years ago when I was 12 (now I am 23). Up until four years ago, my periods were always relatively "normal" meaning moderate bleeding, mild cramps/fatigue and all my pain was managed with just ibuprofen. When I turned 19, my periods suddenly became irregular, going from two-three days long and a light flow some months, to super heavy, week long gore-fests with major mood swings/cravings and generalized body ache. For the last year however, my periods are very irregular, being light one month and heavy the next. When reading about endometriosis, I do exhibit most of the symptoms however the pain I experience is much different. The pain I have is not sharp, sudden stabbing pain, but rather the most intense dull deep ache that radiates throughout my pelvis, low/mid back and upper thighs. It feels as if someone is pulling my insides down/out/sideways, very, very slowly. The pain does not go away with stretching or ibuprofen and I am completely wiped of all energy with no thoughts of anything other than how badly my pelvis aches. This pain lasts about four days from the first day of my period. The rest of my cycle (not bleeding) I am relatively pain free with only moments of mind-blowing hyper-quick jolts of pain near where I think my ovaries are. It feels like a bubble is popping inside of me and the pain is over in about three seconds, but it takes my breath away. 

Does anyone else have similar symptoms? Or am I crazy and this is just normal period pain? I have seen countless gynecologists who have told me to just take an anti-inflammatory but they don't help. I have been on tri-lynyah BC for about six years for my adult acne which so far it helps with. 

I am scared to have a laparoscopy done only to have them not find anything and just tell me that I'm over-reacting. 

Any thoughts/ideas? Am I just a wimp or is there actually something going on? 

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  • Posted

    I got the same symtoms I’ve just being given the mini pill to stop periods so I don’t have the discomfort haven’t started them yet i am too scared to have a lapscopy and with endo it can always come back but been told with the pill it won’t cure it but it will manage the symtoms 
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  • Posted

    Could be endo. We do not all experience the exact same pain, such as arthritis in the neck, in the same way. Mine manifests first as heat, later as pain. So when it comes to endo, we definitely don't experience it all in the same way because our endo spots are not all the same size and they're not all in the same place. Some just have it on their uterus, and some have it on bladder, uterus, tubes, ovaries and intestine. Docs can't tell by our pain description where all the spots are.

    You may well have endo but you will never know for sure til you have a laparoscopy. If they open you up & discover no endo, you may well have something else. If you don't do the procedure, part of your energy will ALWAYS be taken up with wondering.

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    • Posted

      Thank you for your input. You're right, all this energy and anxiety over these weird and painful periods is taking a massive toll on me. I also want kids one day, so figuring out early if I have a condition that could impede that dream down the line is probably the best way to go. I'm just so tired of going to the doctor and having them tell me that I just have IBS or Gastroenteritis or just tell me to take some anti-inflammatories. SO IRRITATING. 

      I wish you the best of luck in your journey to health <3 

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  • Posted

    Hi Kate,

    As some of the other women have said, everyone has different reactions to Endometriosis. But seeing as you do want children one day, that puts you in the same boat as me, and I feel like I should tell you how I went about it.

    I'm 22, and been on various different pills, all for the severe pain, my acne is terrible, but the pain management was more important for me as it was just excruciating. Nothing worked, even my gynaecologist was thinking that it could have just been chronic pain (Dysmenorrhea).

    In December 2017 I made the decision to go for the surgery. Because I want to have children, and I was so worried about what this could be. And no one could give me a straight answer. Not knowing is the worst!! It was eating me up. Like what if it was stage 4 endometriosis or even worse and I had to have my uterus removed (If you haven't already noticed, I tend to over think haha). So although everyone around me told me not to go for surgery, and after a lot of tears and difficult decision making, I listened to my gut and did it.

    After surgery I find out that I had stage 2 endometriosis, which is not too bad. BUT. There was a large cyst ready to rupture at any second, and if I had not gone in for the surgery within the next few days, there would have been a different outcome for me and a lot worse. My gyno felt so bad for making me wait a whole year before pushing me for surgery, but it wasn't her fault, I was too scared beforehand anyways, I felt like I needed to come to the conclusion myself first anyways.

    I'm not in any way saying you should go in for surgery, but I will say if you want answers, if you're tired of not knowing if it's just in your head, then do it. Because that stress can really screw with you. For me, I contemplated the surgery for over a year after suffering with pains for 5years before that. So it was the best decision I made, to finally have that peace of mind. It is not the outcome I wanted. I was hoping it was Dysmenorrhea actually, and that it was all in my head, and it would go away after childbirth, because endo means a struggle to have kids. But it is what it is. And if you are like me and need the peace of mind, then do the surgery. You won't look like you're being silly and over thinking things, no two people suffer the same with periods, with the condition or without.

    Say you do get told you're all in the clear and there's nothing wrong. Then celebrate!!! Because thats Dysmenorrhea and it will go away after child birth, you can still have children then without any worries. Don't for a second feel like you are over thinking and being irrational or anything along those lines. You're entitled to answers about your own body as much as the next person.

    I hope this helps, and please reply with any further questions you might have whether its about the surgery, or the pain, or the after treatment, whatever, I am an open book and here to help xx

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  • Posted

    hi katejo5! did you ever have the surgery?

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