Hi everyone x, i’m currently in the process of trying to get a Endometriosis diagnosis, i’m 19 years old and after struggling for years with extremely heavy and painful periods that are debilitating along with other symptoms like leg and back pain, acne and bloating i have finally been taken seriously by a doctor and have been referred to gyno,
my question is what if i don’t have endometriosis? it might sound like a silly question but im scared that after all these years of being told “it’s just a painful period” what if they were right. I wouldn’t know how to deal with the embarrassment of spending years trying to get a diagnosis just for there to be nothing wrong with me.
(for context my pain is so bad it causes me to be sick as a trauma response and im normally bed bound for days due to the pain)
any advice and/or personal experiences would be amazing thank you xx
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jellycatx
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I think everyone will agree they had the same worry of what if they don’t find anything. I remember the day of my laparoscopy I convinced myself they were not going to find anything and I really questioned myself/ symptoms. I think it comes from so many years of dismissal and being gaslit from doctors. All you need to think is whether it ends up being endometriosis or not, to be in that much pain is not normal and needs sorting! Good luck x
This was so helpful to hear that other people have also had the same fear and i agree it’s definitely from years of being dismissed by medical professionals! Thank you so much for replying that’s really helped a lot xx
Stick to your guns you are struggling they say there's no pain with normal periods. You have to push to get a diagnosis so that you can settle yourself to what's going on. I wish I had pushed instead of coping with it as it's so difficult to manage pain. Some people get diagnosed by ultrasound internally sometimes it doesn't show.
Be kind to yourself and try and get answers don't feel like your a nuisance gynae staff are usually sympathetic especially now it's so documented in the press etc. most of all take care. 🥰
Thank you so much for replying that’s really helpful advice to hear! I will definitely keep pushing for my diagnosis and fingers crossed it goes well for me, thanks again xx
I think because of what we read about women being dismissed we all think this and gaslight ourselves. I was told i had it then was given medical menopause then they decided to operate 5months in, I wasn't informed that zoladex shrinks endo tissue so apparently none was found and then they blamed my bowels. 6 months after stopping and periods returning I had a private lap and endo was there. Keep going you are strong and have a right to answers don't give up 🩷
Completely agree, i think hearing so much about women’s negative experiences with medical professionals and then also my negative experience with getting dismissed has definitely been playing on my mind recently. I’m so glad you ended up getting the treatment you needed and i can’t imagine the struggle you went through to get your diagnosis so thank you so much for replying it’s definitely made me feel more motivated to try get a diagnosis x
Still in that struggle I'm afraid 😨 😭 surgery didn't help me, just left me thousands out of pocket to be no better off. I'm under a NHS specialist now who wants to start again 😫 medical anxiety is real and I'm with you there. But don't give up fighting for yourself x
You e done well to push this far. No one should be in that much pain! You deff need answers. It sounds like lots of people have had good experiences but you might still have to push with the Gynea to get the answers you need. I went to hospital with sever abdominal pain and was told I needed to go to the GP to get them to refer me to Gynea - that was a mission in itself. On the 3rd GP visit they finally did my referral. I waited another 6 months for my appointment with the Gynea specialist to be a phone call and they told me it's normal to have period pain and nothing wrong 😩 At the time I didn't suspect Endo because the GP had laughed in my face when I suggested it. I don't mean for this to worry you at all! Just good to be prepared in case you have to really advocate for yourself still. They will likely suggest trying some form of birth control as that can be a treatment used for Endo. So probably worth reading about laparoscopy before your appointment and have an idea of whether that's what you want to do, as it can be a bit overwhelming to make the decision whether to have the surgery in the few mins you get for your appointment. Or if they don't even mention it you can know whether it's something you want to ask for now, or try the less invasive things first.
Keep going and don't worry about feeling silly if it's not endometriosis. Your pain is not normal! Wishing you strength to get through and get the answers you need 🙏
Thank you so much for replying with such detail that’s really helped me a lot! I have unfortunately been on birth control for years now to try “help” my symptoms which has obviously not worked and after years of dismissal from the doctors i finally met with a doctor who took me seriously and referred me to gynea on the spot which i am very grateful for, i’m aware this is just the start of a very long journey for me but it’s been very helpful to hear your experience and to know i’m not the only women who has experienced dismissal from doctors. So thank you again for your reply, wishing you good health and happiness xx
I’m a bit late to the post, but I’m on the exact same position as you! I have my scans next week and I’m so worried about it all. The most comforting thing I’ve found is reading other women’s experiences and reassuring myself that even if the scans come back clear there’s still a chance somethings been missed! It’s so hard to advocate for yourself after being dismissed time and time again, but you know your body better than anyone and if you think something is wrong then push for the answers!! Stay strong lovely xx
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Need advice, doctor being dismissive....
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