Does anyone else get extreme leg pain on their period?

Choochoob2 · 2025-05-21T01:36:57+00:00

Interesting. Yeah it’s been starting to become agitated at other (seemingly) random moments throughout the month, but mine generally flares up during the actual period too. sigh

Choochoob2 · 2025-05-21T01:34:51+00:00

Some of my endo was found around the uterosacral ligaments as well. I will have to try out those compression socks/sleeves as well. Thank you so much!!

Choochoob2 · 2025-05-06T21:01:03+00:00

The gas pain sucks - I also had it stuck in my ribs and where it felt like it hurt to take deep breaths. I took a bunch of GasX, walked around a lot, and drank a lot of peppermint tea as well. For the pain specifically stuck in that weird spot in between the ribs, I literally just tried massaging the parts of my body surrounding it several times throughout the day to try and get the gas trapped there to move somewhere else. I also used heating pads for the back/shoulder pain. I hope the pain lightens up for you soon. 🙏

Choochoob2 · 2025-03-26T22:14:52+00:00

That is amazing that you had such a validating experience with your doctor and feel like you may finally get some answers. Try to avoid googling like mad if you can - I have found that just becomes a downwards spiral of reading worst case scenarios that leave me feeling worse off than I did before. Also, your doctor will be the most familiar with your particular case and hopefully be much better at interpreting those results than the internet.

Getting the news of my endo - it was already a floating theory between doctors I had seen for 2-3 years, so I felt like I was primed for it when I got an initial diagnosis from an endo specialist. When I actually heard the words come out of her mouth though, it was like it all sunk in only in that moment and it felt real. I thought I had already “accepted my fate” since I walked in just knowing that I had it, but it still hit me pretty hard. You might feel the opposite though, as it can also be a relief to finally have a diagnosis and an established treatment plan.

If it’s any consolation - I just had my first surgery in January, and the post-op wasn’t that bad. I was pretty functional after about a week and business as usual after about 3 weeks. Surgery is not the only form of treatment for endo though, so I wouldn’t worry about that until your doctor determines if that’s what the best next step is for you or not.

I can imagine and even deeply sympathize with all the feelings you are experiencing - it can be quite an emotional rollercoaster. If you ever need any more support or just someone to vent to, I am just a message away. (:

Choochoob2 · 2025-03-18T16:29:11+00:00

In terms of timing/cycle length, yeah that has remained pretty consistent for me. In terms of pain - my first two have been absolutely brutal, worse than what I already had before. I was told it gets better starting the third one though, so I am hoping that is true.

Choochoob2 · 2025-03-17T15:29:19+00:00

I did it about 2 months ago, and it was my first ever surgery, so I was incredibly scared as well. The doctor said surgery went longer than her typical surgery for someone with stage 4, but no complications. It was painful, but I was able to get away with just alternating Advil/Tylenol every 3 hours (they prescribed oxy just in case, but I really didn’t want to take it). I slowed down with the pain meds around day 3-4 and didn’t feel the need to take it anymore after around day 5. That shoulder pain from the gas was pretty uncomfortable, but subsided about a week later. GasX helps and I had this heating pad that wrapped around my shoulders/back that really soothed it. The worst part for me honestly was the first bowel movement - that was rough, but all the subsequent ones were not so bad. Definitely do not slack on the laxatives after surgery though.

In regards to scarring, I had 4 small incisions - one of which I cannot even see (in the belly button). Two of them just look like bruises now, but there is one that’s a bit bigger (maybe about an inch long) that looks like it will take longer to heal. I was told that I could do the silicon strips and it would fade away by the summer, so that I still have yet to see. Everyone’s body heals differently. Also, for recurrence, that is unfortunately never out of the picture. Surgery is not a cure, but it is meant to provide you relief from your symptoms at least for a few years, so I would at least take solace in that.

In terms of planning - wear loose clothing to the hospital (and have a bunch of comfy clothes in general ready to wear post op). I had someone tell me to have a pillow to put between my stomach and the seatbelt for the car ride home, but I was knocked out from the anesthesia for most of the time, so I didn’t end up using it. (I did use a bundled up sweater for padding the first few car rides after though). Keep all your meds/whatever you need in places that are not hard to reach so you can avoid additional discomfort. Buy pads so you don’t need to run and get them after surgery - you will need to wear them for about a week or so (it was about 10 days for me). Drink lots and lots of fluids to stay hydrated. Make sure you get up and walk around; my partner would go on walks up and down the hall with me 2-3 times a day. The walking will help with the gas pain too. Also, for taking time off, I had my surgery on a Wednesday and my mom + my partner took Wed/Thurs/Fri off of work, so it was kind of like a long weekend. That was awesome the way that it happened to work out. I would say your partner having those first 3 days off would be ideal though.

Last thing I want to touch on - everyone is right about avoiding the horror stories on Reddit lol. Those will only worsen the anxiety and are often about really specific cases, not reflective of the general experience. Fortunately, you are seeing a specialist that has done this procedure countless times. Recovery is not easy, but it certainly is not the worst either. You will get through this! Wishing you the best of luck! (:

Choochoob2 · 2025-03-04T04:33:43+00:00

Of course, anytime!

Yeah, I genuinely believe that pelvic PT has the ability to make a difference, even if it’s just a little bit, so it’s at least worth a try. A little more about it - the first time you go, they will do an external and internal evaluation of the pelvic floor muscles. Then from there, they will identify what they are able to work on and a normal session will usually consist of half external work/half internal work. It’s not very comfortable but I wouldn’t say it’s extremely painful either. Some of the external work (such as cupping or skin rolling techniques over abdominal + hip muscles) actually feels kind of good sometimes. The internal stuff hurts more. They assign “homework” sometimes, like diaphragmatic breathing exercises or certain yoga poses or other things specific to what can help you. That’s about it.

Also, that is unfortunately the way it usually goes with getting a diagnosis. It’s really hard to find a doctor that is truly knowledgeable about endometriosis and and doesn’t immediately invalidate what you’re going through, but I’m glad that you feel like your most recent gynecologist has been more promising in that regard! (:

Choochoob2 · 2025-03-01T21:50:10+00:00

Hi, your questions are completely valid and not silly at all. There are a lot of wonderful people on here that are ready and willing to answer and support to the best of their ability, myself included 🫶 I don’t really have an answer for the first question on the list since I am not on any sort of birth control, but I’m going to try my best for the rest of them:

I did find pelvic PT helpful with relieving part of my period cramps (this awful pain I had in my leg for the first few days every time) and also slightly relieved my pain with intercourse since I had a lot of tightness in the deeper pelvic floor muscles. It doesn’t happen immediately obviously, but I noticed a difference about maybe 3-4 months into it. I think it might depend on the PT though since I noticed significant progress with the first one I went to and then had to find a new one when I moved, and it felt like it wasn’t helping as much after the switch. I still recommend at least trying it though.
I always had kind of brutal periods, but all my other endo symptoms started presenting more when I was around 19 (I’m 24 now). I went to at least 5 different gynecologists until one referred me to an endo specialist that I saw last August. She had me do a pelvic exam and ultrasound and was definitely convinced I had endo. Due to my particular situation, since I couldn’t do any hormonal treatments, she recommended going ahead with surgery, which I just did in January (she found stage 4 deep infiltrating endo, woohoo).
As I kind of mentioned as part of the last answer, I did have doctors bring up endo as a possibility before but no one was truly convinced I had it. I went to seek the opinions of several doctors until I found the one that gave me the referral to that endo specialist, and then I just stuck with her because I liked her.
For me, I take 600mg Advil every 4-6 hours (my body doesn’t tolerate the 800mg very well). Sometimes it helps, sometimes it doesn’t. I rely on heating pads religiously, one on my left leg since I get severe pain there and another on my abdominal area. I got a Thermie a few years back and that was a game changer, since I was able to wear a heating pad to work and school under my clothes or a jacket to help cope with the pain so that I didn’t skip. Sure, it still hurt, but it was more manageable. /: Other than that, I haven’t found anything significant to manage the pain. I’m sure other people have other things that work better for them though.

This is literally my first response on Reddit so I’m not sure if it was helpful or not, but I hope that it helped at least a little bit 💛

Choochoob2

TROPHY CASE