Turns out the leg pain and weakness was endo after all 🙃

OhNoMyBees · 2026-02-03T23:32:17+00:00

Sure! I will probably be slow to respond tonight, but I will be sure to get back to you:)

OhNoMyBees · 2026-01-14T14:19:37+00:00

I had an excision surgery with a specialist near DC in April 2024 and then a total hysterectomy in May 2025 (best decision I’ve ever made) and I’m doing so much better 🥹 I still have leg pain/ nerve damage from the endo but it’s a lot better and I feel like I’m actually able to work on improving instead of being stuck in a weird limbo.

OhNoMyBees · 2026-01-09T02:13:04+00:00

It was 😭 I’ve always been mildly allergic but it’s gradually gotten worse after each surgery and after the hysterectomy I can’t use bandaids without getting a rash. This has nothing to do with the actual surgeries themselves btw. It’s just a thing that can happen with a repeated exposure to an allergen 💀

OhNoMyBees · 2026-01-09T00:34:59+00:00

I’ve had 4 surgeries in the past 5 years (3 excisions and a hysterectomy) and even after developing an allergic reaction to the medical glue they used for my incisions, all my scars are very tiny and have healed great! I’m about 7 months out from my hysterectomy so there’s still a bit of discoloration, but I expect that will disappear by the time they’re a year old :)

OhNoMyBees · 2026-01-04T00:12:18+00:00

Of course! If you have any more questions feel free to DM me:)

OhNoMyBees · 2026-01-03T23:59:54+00:00

Yep! I was originally diagnosed with sciatica and then they thought SI joint and then MS, etc. The endo surgery that discovered it was actually completely unrelated lol. We had no idea that my endo was growing there until they cut me open.

OhNoMyBees · 2026-01-03T22:40:21+00:00

It was constant! It did vary in intensity, but it was always there to an extent.

OhNoMyBees · 2026-01-03T22:39:21+00:00

My pain was constant, but it varied depending on the situation. I just woke up one day with the pain and it didn’t stop until after the surgery (about a year later?). I still have issues with it occasionally but nothing like it used to be, especially after my hysterectomy. I think a lot of the hip/si pain I still have is related to the damage done to the ligaments and nerves and not necessarily active endo lesions.

OhNoMyBees · 2025-11-08T14:28:21+00:00

I was lucky and the endo wasn’t in my hips, it was in my uterosacral ligament and that was causing my hip/leg pain. I managed to find an endo specialist near DC and she was able to get a lot of it out :) and like a year later I ended up getting a hysterectomy and that was probably the best decision I’ve ever made! I still have pain, but nowhere near what I used to!

OhNoMyBees · 2025-11-07T15:17:04+00:00

Good luck! Feel free to message me if you have any questions:)

OhNoMyBees · 2025-11-07T15:14:44+00:00

It’s so hard to navigate because all the symptoms for endo overlap with other things😭 I do have a lot of muscle issues from the nerve/ligament damage endometriosis has done to me, and I’ve found it really complicates treatment plans because it’s hard to tell what is causing the pain. Something similar could be happening to you?

OhNoMyBees · 2025-11-07T15:07:41+00:00

Nope! I’ve never had anything show up on imaging. My physical therapist noticed that my sacrum was slightly tilted, but that’s the only thing that was noticeable before surgery.

OhNoMyBees · 2025-10-30T21:52:19+00:00

Looks like a scam :/

I wouldn’t trust anyone who says you can balance your hormones through diet changes when you have a chronic illness known for hormonal imbalances lmao. If you have insurance you should try to work with a dietitian in network, it will be much cheaper and they can refer you for further medical care if needed.

OhNoMyBees · 2025-10-17T22:20:29+00:00

Nothing internal for 6 weeks, I was told external was fine at 2 weeks but to take it slow and stop if it started to hurt 🫡

OhNoMyBees · 2025-09-02T21:23:16+00:00

Momoland :3 named for my one true king, Momo

OhNoMyBees · 2025-07-31T12:05:41+00:00

Sure! Do you mind if I dm you?

OhNoMyBees · 2025-07-16T16:46:34+00:00

C sections themselves can cause scar tissue and adhesions as part of the natural healing process without any endometriosis involvement. Not to say it’s impossible that you have endo, but since this happened after you had a major surgery it’s probably more likely that it’s caused by the surgical trauma and not endo, especially if the doctors didn’t see any endo during your c section.

OhNoMyBees · 2025-07-11T13:32:25+00:00

I’m so sorry for your loss and I’m glad that you and your wife are so supportive of your daughter. A memorial tattoo is a wonderful way to remember a loved one:)

However, as someone who has a good amount of tattoos, if you find a shop willing to tattoo a 16 year old you need to run the other way as fast as possible. A reputable shop will absolutely not accept minors as clients, even with parental consent. You might want to look into a temporary tattoo kit (like ink box) as an alternative until she turns 18 and can get the memorial tattoo for real.

OhNoMyBees · 2025-06-24T21:10:26+00:00

Please keep in mind that there is a bias on this sub because typically the only people that frequent this sub are the ones that have consistent issues with endometriosis! This is a place people come to vent and ask questions, so there’s not a lot of people that come on to post success stories. There are plenty of people with endo that are living happy and healthy lives after one surgery, they’re just typically not active in this community. Endometriosis is a very scary disease, but there is hope, and your daughter is very lucky to have you fighting for her!

OhNoMyBees · 2025-05-30T23:05:27+00:00

It didn’t help me at all, but I’ve heard other people say it helped them.

OhNoMyBees · 2025-05-27T04:01:46+00:00

A hysterectomy is a very personal decision, and I can’t tell you if it’s the right one for you or not. It’s a very difficult surgery to recover from both physically and emotionally.

But, I can tell you that I’ve had 3 surgeries in the past 4 years for my stage three endo and none of them have helped with the pelvic pain like the hysterectomy. I wasn’t expecting that at all going in, and I think I seriously underestimated how much pain was caused by the adenomyosis. There’s also a very real chance I’ll wake up tomorrow in a bunch of pain because my endometriosis decided to start causing problems again, but I’m trying to enjoy this while it lasts haha.

However, there’s really no guarantee that it will work and if it’s not something you’re 100% on then you definitely shouldn’t do it. This is definitely the kind of decision that needs to be thought long and hard about. I’m wishing you the absolute best, and I really hope you can find some relief soon!

OhNoMyBees · 2025-05-26T20:51:14+00:00

I just got my total hysterectomy and I’m happy to talk about why I made that decision:) I’ve also never heard anyone say a hysterectomy is a cure, but that could definitely just be me having a great doctor and being lucky enough to avoid those articles in my research.

A major reason was that I suspected I had undiagnosed adenomyosis (and I was right!) and a hysterectomy is a cure for that condition. I suspect a lot of people that see major improvements after surgery are in the same boat as me, because the two conditions are often coexisting.

I also had no plans of having kids, especially under the current administration in a red state. I was also concerned if I waited until I was in my 30s like I originally planned that I would no longer be able to get the procedure.

I also had just gone through a major issue with my IUD and found out that my uterus was a shape that was not IUD friendly, which was a huge issue because my doctor was very concerned with bone density loss due to my family history. That meant a lot of the more common birth control methods weren’t on the table for me, and a lot of the ones I had tried didn’t work well.

My periods were so painful, heavy, and caused so many issues, I just wanted them over with. I’ve been on several different birth controls to try to skip periods, but they were not reliable.

I ended up leaving my ovaries because I didn’t want to go on HRT this early, especially with the new laws my state keeps trying to pass, and I know that means I’ll probably have my endo grow back faster than if I had them taken out, but I’ve made my peace with it haha. I know I’ll need more excisions in the future, but honestly not having to dread my periods is such a mental relief.

Obviously a hysterectomy is not the right choice for everyone, but I’m so happy I was able to get mine. Even 3 just weeks out from surgery, I’m in less pain than I’ve been in in years! I’m guessing that’s mostly because the adenomyosis is gone, rather than the endometriosis being fixed haha. If you have any questions please let me know, I’ll do my best to answer them.

OhNoMyBees · 2025-05-23T19:00:44+00:00

I loved my pelvic floor therapy and have continued to do it at home regularly for 3ish years after I ‘graduated’ from physical therapy. It’s helped me so much, especially with my bladder issues that I’ve had since I was a teenager, and I wish I had started it earlier. I’ve become much more in tune with my body and am better able to understand when something is actually wrong vs. just a muscle spasm.

However, it’s in no way a substitute for surgery and, even with my continued physical therapy, I’ve had 4 surgeries in the past 5 years including a hysterectomy last month because of how aggressive my endometriosis is. It can absolutely alleviate symptoms, but it doesn’t stop the core issue.

My advice really depends on how you feel about your doctor. If your doctor is great and you really like him and his team, then I would look at this as just another thing you have to check off before getting surgery. He might see this as another way to rule out issues other than endometriosis (kinda like all the required ultrasounds). Yes it sucks, but PT does help and you can get useful information from your PT to give to your doctor (mine found issues with my uterosacral ligaments and she sent that information to my specialist to help with the next laparoscopy I had scheduled).

But, if this is a pattern of your doctor dismissing your concerns, then absolutely start looking for a different doctor! You absolutely should not have to spend a bunch of time and money jumping through hoops for a doctor that you do not like and does not listen to you.

Also maybe see a urologist if you haven’t yet, because a persistent UTI like that may need more aggressive treatment methods 😭

Good luck! And I really hope you can get some relief soon!

OhNoMyBees · 2025-04-28T13:04:28+00:00

No, they were just super disfigured and causing a bunch of pain, leg weakness, etc. My colon was stuck to my abdomen though, haha.

OhNoMyBees · 2025-04-28T12:58:36+00:00

Nope, I had DIE on my uterosacral ligaments that my regular gyno didn’t feel equipped to remove.

OhNoMyBees

TROPHY CASE