Getting diagnosed and coping till then
So I don’t know if I am in the right place really because I haven’t been diagnosed with endometriosis yet but I am on the waitlist to see a gynaecologist with it suspected. I have been having pain with cramping etc for a while but now it’s constant is this normal for endometriosis? The wait list is at least 18 weeks and I am looking for some ways to cope with the pain until then. I have been given naproxen which does help but I have to take it everyday or I’m not ok. I had to leave a friends wedding at the weekend because I was drinking so I didn’t take it and the pain was so bad I cried all the way home. Any advice would be greatly appreciated!
Thanks for reaching out. I'm sorry to hear that you'll have to wait so long to see someone and that you're experiencing such terrible symptoms at the moment. Since you're already using naproxen, I would start here for other ideas: https://endometriosis.net/complementary-alternative-treatment.
I found that gentle yoga that was mainly focused on relaxation and breathing helped me, as well as a heating pad, listening to soothing sounds or music, being outside to connect with nature, and meditation. And sometimes, nothing helped and I just tried to cope the best I could. Sending you hugs! ~Katrina, Endometriosis.net AdvocateDo you mind me asking how long it took you to get diagnosed and get some help? X
I began having symptoms around 13, and of course I was told it was normal and I was given Advil and heavy flow pads. In my 20s I saw a gynecologist who put me on bc and told me to start taking Advil two days before I was supposed to bleed to "get ahead" of the pain. It wasn't until I had a constant pain in the left side of my pelvis that I knew something more was wrong and I went to a different gyn who did an ultrasound and found a large ovarian cyst. By then I was missing days of work every month and in incredible pain. That was when I was 32. ~Katrina, Endometriosis.net Advocate
you are absolutely in the right place. This community is one of the best dear Hannah. I want you to know we are here for you, always. Whether to chat or answer questions the best we can. So sorry you are dealing with such pain and have to wait so long to be seen. I am happy you will be getting seen though. Hopefully they will be able to give you more answers and help you find the relief you need.
I will say for myself, I definitely experience constant pain and cramping with endo, especially before I had surgery. Of course, everyone is different, and it could mean other things going on, like cysts, or fibroids for example, but endometriosis could cause a lot of discomfort. Wish I could just hug you.
As for ways to manage pain, Katrina left a great article, but I will share some things that also help me personally. My TENS unit (you can find on Amazon), switching between heat pad and ice pack, light stretching, walking and yoga. I also found changing up my diet and leaving out foods that are inflammatory or I know just don't sit well with me. Music takes my mind off things for a while, meditation relaxes me. And like Katrina said, sometimes just doing nothing, letting myself cry and lay there weirdly helps me too. Just know, you are not alone <3 Sending you all the love and good thoughts I can. -Kimberli (endometriosis.net advocate)Thank you very much for your reply. I have had an ultrasound which found some fibroids but they are just out of the range that the doctors say would cause the pain so they said it’s not that. Tbh it kind of helps to know other people experience the same thing I just wish I knew for sure what it was so I could name if that makes sense I have had several tests and so far nothing that would cause the pain so I just feel deflated really hope that they can give me answers 😂 everything I read about endometriosis sounds like what I am experiencing so I hope it’ll be the answer 😂😂 I will try your suggestions thank you x
You’re definitely in the right place. I’m sorry to hear you’re in so much pain. There can be so many reasons for it, and you may have to try a mix of things to feel better. I’ve had 3 surgeries for endometriosis and I still have a lot of chronic pain on and off my period. There is no lesion that is directly responsible for it. I do take a prescription anti-inflammatory for my period pain — my doc thinks I have adenomyosis, which may make the cramping worse. For everyday pain, I have to do a variety of things. That includes changing my diet. For me, I had to go gluten-free. Otherwise, I feel like I have arthritis all the time. I also found that pelvic floor therapy relieved my pelvic pain more than surgery. I also saw a spinal pelvic floor therapist for back, hip, bladder, and leg pain. Here are a few articles that explain my experiences a little better. I’ll leave them here in case they’re helpful: https://endometriosis.net/living/symptoms-experiences; https://endometriosis.net/living/giving-up-wheat-joint-pain; https://endometriosis.net/living/meditation-pain; https://endometriosis.net/living/bladder-pelvic-pain
If you haven’t already, might I suggest talking to your regular doctor about a short and long-term pain control plan. That might include a medication you take every day or perhaps adding pelvic or physical therapy before you see an endo specialist. They can let you know what’s safe to do every day. I hope some of this is helpful. Wishing you well! - Keri (endometriosis.net team member)
