Some advice

[thealevelstudent]

Hello,

I don't really know how to start off. Around a year ago I was diagnosed with primary dysmenorrhea. I have been suffering with pain and fatigue since I was 11 when I first got my period. I was given birth control and regularly take a series of medications to help me somewhat function during my day to day; these include tramadol, panadol, feminax, mefanamic acid, tranxamic acid, diclofenac, colpermin, buscopan, iron, cocodamol, etc. I use heat patches, hot water bottles, mint patches, tens machine, yet nothing can prevent these ever so recurring cramps I get during my period followed by a 50p size coin blood clot, usually anyways. These cramps have intensified over the years. Of course these things have helped. But that one cramp that occurs once daily for 5 days during my period and the odd one or two during the month can't be stopped. These cramps put my whole body into a deep spasm, where I can't move all I can do is lie on the floor, scream, cry and eventually feel like throwing up and once over, I feel faint. I feel my heart racing faster than anything ever heard of. My body is shaking and I'm sweating, hot flashes. For the rest of the day I remain weak and faint, unable to carry a glass due to the utter exhaustion I face.

I have been in and out of the hospital since year 6, been dismissed with things like gout, pneumonia, ibs, and primary dysmenhorrea, despite scans showing otherwise. My bloods are usually that of a healthy person, maybe the odd vitamin D deficiency, but nothing too alarming. One time I remember distinctly the doctors noticed something bizzare during an ultrasound and was refered for a full body CT scan. Of course they said they found nothing. Then my scans miraculously were lost. I've been accused of it being in my head, or had doctors look at me alarmingly stating that I look to young and healthy for them to ever suspect anything major. I was finally diagnosed with primary dysmenhorrea, yet my symptoms mimic that of endometriosis, and nothing has been confirmed as there was no scan to state otherwise.

Now my family and close friends insist I see a doctor for what they say to be the last time. The truth is I don't want to know anymore. I don't want another blood test, another useless scan. I'm tired of the pain and suffering, but honestly I don't care anymore. I want to live my life and just accept the pain, I can't be bothered to waste it in a hospital anymore. What should I do?

[Cherry245]

Hi, I’m so sorry to hear all you have been through. Endometriosis is really pushed aside and ignored by many doctors even though it is one of the most painful conditions to live with. I don’t have great advice but I just wanted to share with you that I was fighting for a diagnosis for years before I got mine.

I have had doctors put me on birth control pill, one after the other. I have also had doctors tell me the same, that it’s all in my head… I even had one ask if I was suicidal?!

It took them 3 surgeries to finally diagnosis me, all from different doctors.

I just wanted to tell you this because there is a light at the end of the tunnel. It is extremely exhausting and it’s understandable all that you are feeling.

It’s so hard to watch people your age going off doing this you want to do but you hardly being able to get out of bed.

Keep pushing, get those bloods done, more scans if needed. Push with your doctor and insist on everything. It is YOUR body and only you will know if something is wrong.

Now that I had my third surgery and they took out my cysts, adhesions, endo and they also placed an Mirena IUD. I have never felt better and my life is starting to fall into place.

You are not alone, keep fighting❤️

[thealevelstudent in reply to Cherry245]

thank you so much for your reply, I have had them ask me about my mental health when I am 100% perfectly fine too! I needed to hear this thanks

[royalfizzbin]

Hi there, that all sounds really difficult to deal with. I have had a somewhat similar experience where I've had bad menstrual pain since I was 12, tried the pill twice, tried the mirena coil 3 times (once the procedure to insert it was so bad I threw up from the pain) but after the last time where I had it inserted in a hospital under local anaesthetic, with ultrasounds before and after and 6 months of constant pain that left me in bed, I got an appointment with a private consultant. He heard all my history, that I was diagnosed with primary dysmenorrhea about 3 years ago, gave me an internal ultrasound (in which i also threw up from the pain) and confirmed I had endometriosis, probably superficial. Now I'm on different hormonal treatments, decapeptyl to stop my periods, tibolone to reduce the risk of low bone density, and duloxetine as a nerve pain treatment (amongst other more usual pain medications). I suppose all I have to say, is it sounds a lot like endo (obviously I'm not a health professional) , and if you persist and fight for yourself, you will get answers. Advocate for yourself, bring in a family member or friend into a doctors appointment if you can because they can provide a secondary opinion on how much it is impacting your life! You can do it, and it took me a long time (13 years since it all began) to actually get a diagnosis, and you deserve to not live in pain!

[thealevelstudent in reply to royalfizzbin]

thank you for your advice, ok I guess I'm gonna do this and give it another go 🧡