Forum
Endometriose in Balans is gevestigd in het ziekenhuis HMC locatie Bronovo te Den Haag. Maar het centrum biedt ook een online platform voor het uitwisselen van informatie met lotgenoten en deskundigen.
Laatste forum berichten
- Katejuni 14, 2022
Hey everyone,
I see a lot of people asking here about their symptoms and if it could be endo.
As someone who has lived with chronic pelvic pain for the last 18 years, from what I now know to be adenomyosis and endometriosis I would recommend:
1. Ask your GP for a referral to Endometriose in Balance to be checked by someone who knows what they're doing.
2. If you GP isn't listening to you or refuses, ask them to document their refusal on your medical file and then go to someone else. And this goes for any specialist. If they dismiss you or don't listen, or gaslight you please go to someone else! Pelvic pain is not normal. Period pain which stops you doing every day activities is not normal. Don't let anyone tell you it is normal and to just deal with it. Get it checked. Trust your instincts, you know when something isn't right in your body.
3. Educate yourself on endo/adeno etc. I have found the knowledge of most specialists to be lacking. So arm yourself with information and questions, find support networks online, social media, in person. And document your symptoms, eg keep a pain diary. I found this makes the conversation easier. Make them understand your pain, rate it on a scale, or what does it stop you doing? Make them understand how much it impacts your life.
Good luck to all of you and don't be afraid to fight for yourself and your health.
- Katejuni 14, 2022
Hey Mildred,
I think it depends if you're going to try an LH RH agonist or LH RH antagonist.
I am currently on Lupron (leuprolide acetate) which is an LH RH agonist. I have been having monthly injections for 5 months now, so have 1 month left (you can only take it for 6 months). I started taking it as I have chronic pelvic pain from adenomyosis and endometriosis. Other hormone therapies weren't effective, so this was to see if a I would be a candidate for a hysterectomy.
I have read that everyone had very different experiences on Lupron, but for me it has been an absolute life saver and life changing. I have been very lucky to not experience any major side effects, and it has stopped 100% of my pain! I can't believe how effective it has been, I never thought I would have a life without pain.
So I am now on the waitlist for a hysterectomy, which I am so excited for (feels weird to say!).
I hope whichever treatment you're trying works for you!
Kate
- Debbiejuni 9, 2022
Als je endometriose hebt, is het dan voorkomend dat je hematurie ( bloed in de urine) hebt?
Zowel zichtbaar als macroscopisch? Of is dit niet gerelateerd aan endometriose?