New to endometriosis and maybe IC?
Hello!
I'm 27 and I got diagnosed (not laparoscopically though) with endometriosis in 2021 December. I've been in constant pain for 4 months and I'm still waiting to start my treatment as my period decided to not show up in December at all.
My sufferings started back in August when I experienced pain 2 days before my period and it also started a week before I expected it. In September it started a couple of days late with the same pain but sudden urges to urinate added to my symptoms. And when I had these urges, I was peeing a lot. I had to go to sick leave because I could barely last 20 minutes between two visits to the bathroom when I had these urges. I also felt stabbing pain sometimes on the right side of my lower abdomen and I had cramps at night so bad that I had to go to the ER where of course my tests came back negative except for my urine in which microscopic blood was found so I got treated for UTI but it didn't help.
I became a frequent visitor to the urologist and the gyno because the constant pain in my lower abdomen and the urinating problems didn't want to go away. I ended up having a cystoscopy which showed nothing serious; my mucosa was a slightly bit more hyperaemic than usual but it couldn't cause my problems. It also turned out that I had a cyst on my right ovary and my uterus was a tiny bit twisted because of the constant cramping.
My GP gave up on me and said to try to learn live with the pain although I could barely walk but at least my problems with urination got a bit better; I don't really have the sudden urges anymore but I always feel a strain in my bladder which gets worse while sitting because I feel a pressure on my bladder. Sometimes I even feel like I have problems with emptying my bladder.
I changed my GP in December and when I told them about my problems they immediately said it's all because of endometriosis and a gyno confirmed it that day but I'm still afraid that my bladder problems won't go away once I start taking the birth control pill.
Has anyone ever experienced symptoms like these? I know frequent and urgent urination is one of the symptoms but don't these mean you have the urge but only a little amount of urine passes? I'm so confused and afraid.
, Hi! Firstly, we just want to thank you for being here and welcome you to the endometriosis community. We are so saddened to hear of the pain you are in. Gosh I relate SO much to those urine pains and symptoms and being diagnosed with a UTI but the meds never ever working. I had a cystoscopy too! And for a bit after that, I actually did find some relief. My urologist had said that for some people, that does happen and can be a form of treatment, to have one done every few months or something crazy like that. Even though it did seem to help a bit, I was thinking eh no.
It angers me that your GP gave up on you. I am so sorry. I know so many of us deal with doctors like this and it is not ok. They can't figure out what it is so say we are okay and go on to their next patient. I am happy you did find a bit better of a GYN who was able to give you an answer. How did they confirm your endo? Through a scan or just your symptoms?
Endometriosis is SO tricky. The only way to truly diagnose it and see where else the endo could possibly be growing, is through lap surgery. Which may be something to consider eventually if the BC does not seem to work out for you. My personal experience, my BC pill did not help with my symptoms unfortunately. Honestly, neither has surgery really.
I know I am not a doctor so I can't 100% tell you the answers to your questions but for me personally, my second surgery did find endo near/on bladder and my ureters which was causing a lot of that pressure and discomfort. But I still was getting that constant urge and only passing a little urine, come to find out, I do have IC. It was a longgggg journey to finally receive that diagnosis. And like I said, I don't know for sure, but your symptoms definitely sound similar to mine! It wouldn't hurt to maybe get some other opinions from a new urologist or even an endometriosis specialist.
I do hope you find the answers and relief you need though dear warrior. Please know you are not alone in this journey. We are all here for you, so reach out anytime you have questions or need to chat. Please keep us posted on how you are doing as well. Sending big hugs <3 -Kimberli (team member)Hi
, thank you for the warm welcome!
I'm glad to find someone who I can relate to in my pains because everyone talks about painful menstruation but it's rarely mentioned that endo can affect your bladder this badly. When my urologist did an ultrasound he asked me if I had had a tampon put in but I never use tampons, so I thought it might be a cyst that puts pressure on my bladder and that's why I had these symptoms. But when I went to a GYN like 2 weeks later they only found the one cyst on my ovary. Perhaps the urologist could see something I would pass on on further cystoscopies too, thank you very much because after that the pain in my lower abdomen only got worse.
I was basically squirming in pain when I went to see my new GP, and when I told them about my symptoms they called their GYN friend right then and there to see me ASAP, and the GYN believed us so that's how I got diagnosed.
IC should be seen on cystoscopy but other than that tiny bit of hyperaemia there was nothing so now everyone hopes BC will help my symptoms. If not, I'll definitely try to find a new urologist or even an endometriosis specialist. This waiting is nerve-wracking though.
Thank you for taking your time to read my post and reply. I hope you're doing fine!
Hi
, I'm so glad that you have found out community! Bladder pain and urgency are tough to manage. Sooooo frustrating to hear that your GP gave up on you! You are super brave to have advocated for yourself and found a new GP that listens to you, and a gynecologist that will help.
The bladder symptoms you describe can be common with endometriosis, or with IC as you've said. So hopefully treating the endo will help the bladder feel better as well. Here's a link to an article that talks more about bladder pain: https://endometriosis.net/symptoms/bowel-bladder-problem
While you are waiting to start treatment, there are some things you could try yourself that might help the bladder, if you haven't already. There are some over-the-counter meds that can soothe the bladder, and some foods/drinks that tend to make bladder irritation worse--caffeine, obviously, but others too like some supplements, acidic juices, and alcohol. You could ask your urologist for a list of dietary changes to try for now.
Please stay in touch with us here and let us know what you figure out. And of course, stop by if you just need some support. We believe you and are here for you. Sending big hugs and best wishes! -Audrey (endometriosis.net team)thank you for the welcome! My symptoms are sooo weird, sometimes my bladder feels fine and then I drink something (I totally have given up alcohol and caffeine) and then I have to go to the bathroom in 20 minutes so I should really figure out what triggers me. Now I'm at the point where I don't dare drinking anything else than water and unflavoured fruit or herb tea but it seems like it helps a bit.
Cystoscopy didn't find anything serious and I guess that slight hyperaemia can be from the inflammation of that area in my body, or at least I hope so it's "only" that and it calms down once I start BC, which should happen in a week.
Right, such good news that the cystoscopy is done and not showing anything major. I hope you are able to start the pills soon and that they bring some relief! -Audrey (endometriosis.net team)
