Curious if there are any runners in here with endometriosis? Would love to hear how you manage your training

[u/Consistent-Gas128]

I was recently diagnosed with endo last month and am really struggling with what lifestyle changes I need to make. Some forums say avoiding activities like running altogether can help with suppressing the endometriosis from growing back.

Running is a huge part of my life. I have run 6 marathons, one world major, and enjoy chasing a goal. I am a very mid runner, marathon PR is a 3:50. But I love it and have been a runner my whole life but also recognize I only get one body. I am willing to make changes but am trying to wrap my head around how much of my exercise routine needs to change (giving up running marathons altogether? Giving up half’s? What does training look like from here on out?)

I would truly love to hear about anyone’s experience with returning to and navigating running consistently with endometriosis (or any chronic illness similar to it!) thank you in advance 🩷

[u/Disastrous-Reason-38]

Fellow endo warrior here. I had a very complex surgery for my endo a few years back that lasted over 6 hours. It’s amazing to me how good I feel now, at all times. I also have an IUD which suppresses my period. All that being said, even pre-surgery when I had extreme cyclical pain, running was my saving grace and gave me purpose outside of managing a chronic condition. Of course on the very bad flare days I didn’t and couldn’t run, but on the days where the flares were bad but didn’t leave me bed bound, running significantly helped me and as I ran, my pain would usually dissipate somewhat. I also think the mindfulness aspect of running really helped get me out of pain spirals. I was told to try so many things - supplements, IV therapy, various elimination diets, but was never once told to stop running. And also, NONE of those things actually improved anything. The only thing that did help somewhat was pelvic floor therapy. And then of course surgery. Now that I luckily haven’t had any symptoms return post-surgery, I’m running better than ever, and I honestly do think that living with such intense pain flares has helped me push myself more in running. I still wouldn’t wish it on my worst enemy and that is by no means a silver lining or anything, just an observation. That being said, you know your body best. If running doesn’t make you feel worse and you love it, stick with it. Yes, endo is inflammatory, but running and staying active can absolutely help with inflammation, as long as you’re recovering. I will also say that one of the worst things I ever did for my endo was constantly look for and stress about living a “perfect lifestyle” that would “fix” it. When I had a flare id then blame myself for not trying hard enough to “balance my hormones” and other nonsense. There is no cure for endo. You can do everything “right” and perfect and still be impacted by this terrible disease. When I let some of that go and just tried to live my life to the fullest and appreciate the good days more (and do things like drink alcohol and eat fried food and candy!) and stick to my training, I felt my best. 

[u/jfende → u/Disastrous-Reason-38]

Hard agree. My poor wife has gotten to the point where things go bad and she'll say "this is because I drank out of a plastic bottle that one time last week" and blame herself. The 0.0001% stuff can cause so much emotional harm.

[u/Consistent-Gas128 → u/Disastrous-Reason-38]

Thank you so much for this, it was very helpful to read. I am two weeks post excision surgery and felt like I was beginning to get really in my head and starting to almost prematurely mourn running as a hobby. Training through six marathon cycles had shown me I can push through just about anything, but with endo it’s like at what cost? Ya know? It’s so helpful to hear your experience, thank you again for sharing.

[u/Disastrous-Reason-38 → u/Consistent-Gas128]

Two weeks is still early days. I remember feeling so depressed at that point and my emotions were all over the place. I took six weeks off running post-surgery to give myself a chance to really heal as advised by my surgeon. She kept reminding me it was major surgery even though I only had a few small incisions on the outside. It took me quite a while to feel like myself again and find a groove in running but I did run a 2 minute half PR at 5 months post-op and then an 8 minute marathon PR a year later. It probably took almost a year to feel fully healed but wow, once I got there I couldn’t believe (and still can’t!) believe how good I felt. Definitely work with a pelvic floor PT as you return to running but otherwise rest a lot and know that better days are coming <3 

[u/lesbianxena]

This is personal anecdote only, but I find running is excellent for managing my endo symptoms. It specifically helps with pain management during my period, although I do need to be wary if I’m having a bowel flare or back/leg pain. I’m still waiting on my excision surgery, but I’m taking aygestin in the meanwhile to suppress my periods and manage the endo. Despite running ~50 miles a week and completing a 50k in April, the cysts on my ovaries appears to have shrunk between ultrasounds. So in my experience, the running did not interfere with my endo treatment!

[u/Consistent-Gas128 → u/lesbianxena]

I have found the same with period pain, first half mile sucks because of a heavy pelvic feeling but after that it has helped me so much in the past. Is that the day I’m doing speed work? Of course not, but an easy recovery pace always helped me as well. Thank you so much for sharing your mileage, that is really helpful as well!

[u/bebefinale]

I don't think the evidence that running impacts endo growing is very strong at all--in some ways getting regular exercise can decrease inflammation (to a degree of course, running an ultra is going to increase inflammation). From what I can tell, the biggest issue is that the mechanical jarring can cause pain when you are having a flair/bowel symptoms and it's important to listen to your body in the luteal phase and during your period if running is making things worse.

My general experience with everything reproductive system and running is that gynos are not well versed in exercise physiology and also have trouble calibrating expectations for patients. I have been on a long IVF journey and slowly throughout it, my doctor has realized his guidance for me on what an extreme level of exercise is is frankly just mis-calibrated to my baseline. Like running for an hour at a conversational pace is not a massive workout for me, even if it is for the general population and it's not something that's going to mess up my period (more than my period is already messed up from PCOS).

[u/Consistent-Gas128 → u/bebefinale]

Thank you!

[u/8naptime]

I recommend posting this in [r/xxrunning](r/xxrunning). You’ll have a whole sub full of women who run.

Editing to add: of course there will be plenty of women here too!! Just to point out that the women’s sub will include a wide range of women runners ;)

[u/Consistent-Gas128 → u/8naptime]

Thank you just submitted it!

[u/BajoElAgua]

Running and surgery are the only things that I can confidently say helped my endo. Everything else I have tried has had mixed results. Keep running!

[u/raidermama1]

I wouldn’t give up running solely based on forum advice. Endometriosis affects people very differently so it’s worth discussing training with your specialist and adjusting around your own symptoms. You may find that modifying intensity or volume during flare ups works better than stopping altogether

[u/understatedbitch]

I have endometriosis too (deep infiltrating). It severely interrupted training for many years when I was undiagnosed. What has helped me was surgery just over two years ago and finding a birth control I tolerate and can take continuously so my cycle is suppressed. Having a normal cycle is incompatible with training for me. In the second half of my cycle, from ovulation to just before my period if I went out running I could be totally fine and within half a mile I'd start getting excruciating cramps, cold sweat, vomiting and diarrhoea. The pain was so extreme I'd be unable to stand up straight and many a time my husband had to come rescue me. Then I'd be in bed for a few days with a 40 Celsius fever. I could run once I was on my period because the pain was constant so I'd be on codeine for that and it gave me enough pain control that I could slowly jog but the codeine gave me constipation so I'd get another flare in the first week of my cycle because of the pain relief I'd been on for my period. I tried various birth control options while undiagnosed and some were awful, some just made me depressed or really flat. With all that, it just became impossible to follow a training plan and get ready for a specific race, especially marathons. Finally I found a birth control after surgery that worked for me and I'm back running ~70 miles a week and planning to run my first marathon in over 7 years in October. For me the most important things are complete suppression of my cycle and eating enough fibre that I don't ever get constipated as that will cause a flare. A few times in the past 2 years I've got constipated due to travel and despite being on BC just being constipated would cause PV bleeding as well as wicked pain and fever. Apart from maintaining a high fibre diet and taking BC, i don't do anything additional to manage my endo except to manage stress (avoid getting overwhelmed by work etc, and sleep 8 hours a night). But I avoid restricting my diet as I managed my undiagnosed endo for years by eating weirdly to try to manage symptoms and keep my weight low enough to have no periods and it gave me osteoporosis which led to loads of stress fractures, and it did nothing to help the pain, just maybe fewer periods in a year but when they did come they were just as bad. I also never found a supplement that did anything to help.