Venting/needing advice; I'm so tired of being dismissed
First of all, hi to everyone reading this.
It's going to be a bit of a long text, so thank you in advance to anyone who takes the time to read and reply <3
So, I have a lot to say, but I’ll try to keep it brief.
I’m 21, and over the past year, my period symptoms (especially the pain) have gotten worse—they were already bad enough, but (suprise surprise) it never occurred to any doctor that I might have endometriosis or adenomyosis.
Fast forward to the beginning of the year: I was diagnosed with adenomyosis, and since then things have only gotten worse—even though it was supposed to be the opposite, since I now had an official diagnosis.
With great difficulty, I was referred to a center specializing in endometriosis and adenomyosis, but in hindsight, things didn't get better at all.
Despite severe psychiatric side effects from other birth control pills, I was prescribed Slynd, and after three months, I wasn’t myself anymore. Once I stopped taking it, I had much more painful periods (Brufen didn’t touch my pain) and constant headaches due to hormonal fluctuations.
Throughout all this, I could and can only contact the center by email, and they generally respond after at least one month. So I suffered terribly without any help.
Even though I repeatedly described my excruciating pain and the side effects of the pills, I wasn’t offered any other type of pain reliever.
It wasn’t until May that I was prescribed an MRI, which then revealed DIE. I still don’t understand why they didn’t diagnose me sooner, given the severity of my symptoms (and given they're a specialized center).
Anyway, once I was diagnosed, nothing changed. After all I had told them, they still prescribed me dienogest, and it was so terrible for my mental health that I still haven’t recovered, even a month after stopping it.
Now they even want to prescribe me Ryeqo (Myfembree).
Like, are you kidding me?
No doctor takes me seriously, and it seems like the psychiatric side effects caused by the pills are just a joke or simply something I’m supposed to put up with as if it were nothing (they're so severe that they make my life unlivable).
I’m so tired of going to appointment after appointment and seeing no improvement and just being dismissed like this.
Have you had similar experiences but things got better? I don't really know what to do. I'll contact another specialized center soon, but all the doctors I've seen so far have acted more or less the same way and tell me that I absolutely must take hormone therapy, otherwise my endometriosis will spread (yet I've read a lot online that says there's no certainty that hormone therapy will slow down endometriosis).
Any advice is welcome <3
Hi,
Firstly sorry that you’re going through this.
I also have stage 4 / DIE endo and severe Adenomyosis so I understand the feelings of dismissal.
I one day hope for a life free of hormone therapy once I manage my symptoms better but unfortunately with Adenomyosis that can be more difficult due to Adenomyosis not being treated through surgery (can have hysterectomy but that may not be a suitable option at 21 if you do want children in the future).
I have just had endometriosis excision surgery which I would firstly recommend.
The surgery process is extremely difficult and painful but it is your best chance of less pain. Ensure you go to a specialist and preferably a surgeon who can operate the robotic tools. My surgeon was Ms Nahid Gull who operates in the UK.
Next I would look into the Marinea coil for management of Adenomyosis. The hormones are given locally into the uterus so can be tolerated much better if you have had previous mental side effects from birth control pills.
Then perhaps look into being prescribed bio identical hormones instead of synthetic hormones as the body can tolerate them better m, for management of Endo. I think you may have to discuss this with a private clinic first and then could speak to your GP about having it on repeat prescriptions. I’ve recently been researching the Marion Gluck Clinic who prescribe these hormones.
Then in terms of pain management accupunture is great and good for stress management that comes along side life with a chronic illness.
Most importantly look after yourself, be kind to yourself and know you are doing the best you can.Thank you for all the useful info and for taking time to read my post and reply! I'm glad you got surgery and I wish you a speedy recovery <3
I want to go back to being myself now after the *terrible* experience I had with dienogest, and then I'll consider the IUD. For now I'm managing the pain with a healthy lifestyle, acupuncutre, and soon I'll try with pelvic floor physical therapy 😀
Thanks again and have a nice day
xx
Hi, thank you for sharing all this, it takes a lot to write down. I have adenomyosis too so a lot of this hits close to home, though my own experience with treatment was actually smooth, so I can't speak to the dienogest or Ryeqo side from personal experience. What I can say is the difference a doctor who actually listens makes is enormous. You're already doing the right thing looking for another center instead of accepting being dismissed. Trust what your body is telling you.
Thank you for taking the time to read this and reply!
I'm sorry to hear that you also suffer from adenomyosis... it's terrible.
Thank you for your kind words, and yes, I'll keep looking until I find someone who really listens to me. Luckily, I've found a better doctor lately—fingers crossed!Have a nice day <3
This sounds incredibly frustrating, especially after repeatedly explaining how badly the medications are affecting you. For me, the biggest relief came when I stopped feeling like I had to just push through a treatment that was making me feel worse. I know that feeling of going from appointment to appointment and still feeling unheard :/
Thank you for your reply! It is very frustrating, especially because this all could've been easily avoided and it was absolutely unnecessary. It's a bit better now but I'm recovering very slowly and it's a lot of ups and downs.
