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More endometriosis 5 years after hysterectomy?
Hello,
When I had my hysterectomy 5 years ago, the Dr informed me the surgery had taken much longer than anticipated due to the endometriosis being much more widespread than expected. They had to “free up” my bladder, parts of my bowel, etc. they also took my fallopian tubes, but both ovaries remain. About a year ago, a small cyst on my right ovary was seen on MRI but nothing was done at the time. Also on this MRI, a mushroom cap was noticed, which I am just now realizing could be an indication of bowel endomitriosis. A few days ago, I found a large painful circular lump almost right on top of my pubic bone, slightly to the right. Right below that, almost trailing down from it, are more painful irregular shaped lumps that trail down for an inch or more. Soon after discovering these (like within hours) pain begin radiating up and down the back of my right leg, up my right butt cheek, and into my lower back. I also have this pain in my outer vaginal area. Does anyone have experience with endomitriosis reoccurring after a hysterectomy? Also, I’m not sure if this is slightly emergent or not? Do I try to get into my gyno at Mayo who did the original surgery, or just into PCP at this time? I look forward to hearing from people, and thanks for reading this far, lol!
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@kariabrown My provider at Mayo Clinic who I've been seeing since my hysterectomy in 2019 told me that any new unexplained pain that does not go away and becomes more intense should be reported. I've had pain that occurred because of trauma such as falling on my shoulder. That kind of pain has an explanation and the pain did not become worse over time. About 4 years ago I had pain in the groin/pelvic area that worried me. I went to my PCP who asked me lots of questions including what activities I'd been doing. Well, I'd gone cross-country skiing within the past few days and it was the first time after my hysterectomy. I'd never had that kind of pain after skiing but since my pelvic tendons and muscles were all "rearranged" this is why I had that pain. But I can tell you I was pretty worried. That pain slowly diminished over time. I have since changed my technique and skis and haven't experienced groin pain again after skiing.
I had a hysterectomy at Mayo Clinic for endometrial cancer. I've never had endometriosis so I can't give you my experience with that. Other members here will be able to share their experiences.
Are you still being seen for follow-up appointments at Mayo? If yes, then I would contact your gynecologist's office at Mayo and find out how soon you could get in to be seen. If you haven't been to Mayo Clinic for some time then I'd suggest seeing your PCP or your local gynecologist ASAP.
Will you call or ask for an appointment today?
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1 ReactionHello,
Thank you for your response! After a few hours of stressing, I decided to call my gyno at Mayo, who I do still see. They got me in at 7:45 am tomorrow, which I am very grateful for. But, I do live about 2 hours away from the Rochester Mayo Clinic, so as I type this, I am in a hotel nearby so I don’t have to get up so early to drive!
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2 Reactions@kariabrown This is good news. I've been thinking of you and wondering what you decided to do. I'm so very relieved that the gyn department at Mayo got you in for an appointment so quickly. Since your post was written last night I'm thinking your appointment is this morning?
When you feel up to it (perhaps after you get back home?) please let me know what you found out. Knowing how Mayo Clinic does things I'm thinking this is not a "one and done" appointment and you may be scheduled for more appointments today. Tests? Treatments or surgery to consider?
@naturegirl5
I saw the Dr this morning, and she didn’t really know what to think, it seemed. She wanted a soft tissue ultrasound and an abdominal ultrasound. Once she viewed these, she would decide if she wanted an MRI. I got into one ultrasound this Friday, and the second one isn’t until Dec 5! So, I have been sitting here since about 9:30 am as a checker, hoping they can squeeze me in for that Dec 6th one. It seemed kind of promising this morning, but not so sure now lol
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1 Reaction@kariabrown Were you able to get in s a checker? Sometimes that has worked for me. I live 7 hours (by car) from Rochester so I've done the same as you when testing or another appointment is needed and it's too far into the future. My nurse practitioner told me that it's difficult to schedule an MRI at short notice. So, I have returned at a later date for a PET/MR or MRI.
@naturegirl5
Unfortunately, I wasn’t able to get in. At 3:00 they told me I should go ahead and go, it wasn’t going to happen that day. When I woke up this morning, I did my daily check of the painful area, and there are a few more lumps right above the main spot where I noticed it first. At this point, I’m kind of freaking out. It scares me that whatever it is spreads so quickly! I go up for one ultrasound on Friday at 9 am. I’d like to get my name on the checker list right away in the morning, but I’m assuming they won’t put me on until my actually ultrasound appointment is done.
My first question would be are you on an HRT, and if so, when did you start? I had a "pan hysterectomy" which means they took everything. I was operated on numerous times for cysts on my ovaries because of PCOS. It was done through laparoscopy or full bikini cut. My androgen levels started to climb in my 30s, so the doctor said at that point a hysterectomy was in order. (It was either that, or a zipper) I found out at that time, I had horrible adhesion from all the past surgeries and I had endometriosis. I was never told I had that extra complication. Everything was basically glued together inside of me, so they had to open me up. I was started on the patch for HRT. That didn't work, so they tried other brands. About 3 months out, I had pain again, just like a cyst. It made no sense. I had nothing left. It turned out they did not get all the endometriosis, and estrogen helps it to continue to grow. I had to be operated on one last time. Don't know if any of this could apply to your case... but, yes endometriosis can return depending on certain factors. I just read all of your posts. Didn't see them at first. It does not look like my condition at all. I sure hope you can get your tests sooner. That is very worrisome. 🙏
@kariabrown Your ultrasound is this morning if I've figured this out correctly. I do understand why you are so anxious about all of this. Finding more bumps is scary. Yes, getting yourself on the checker list after your appointment is a good idea. I think you mentioned that the next step after the ultrasound is an MRI? Perhaps someone will cancel or not show up and you can sneak into their spot?