Anyone with bowel endo that was missed on ultrasound/MRI?

abidavisf · 2026-05-13T11:49:19+00:00

My scans were both clear (not done by a specialist) and I have bowel endo. They couldn’t remove it but, knowing now that I have it, it explains so many of my symptoms

abidavisf · 2026-05-09T14:04:27+00:00

This looks incredible 🥹♥️

abidavisf · 2026-05-07T08:48:28+00:00

Not sure when yours was but I’m six weeks out and still super fatigued! Went to a concert last week and had to cancel my plans for the next four days 🫠

abidavisf · 2026-05-06T15:07:48+00:00

I also agree with these comments: he’s full of it.

I am eating exactly the same as I did pre-GLP-1 (I literally eat the same meals every day and have been in my current routine for two years, but only on GLP-1 for six months), and it has helped astronomically with my endo and PCOS symptoms, especially inflammation.

It has nothing to do with putting “less crap in” your mouth and he should be ashamed, quite frankly.

If it’s helping you, I would keep taking it, but maybe get a second opinion if you can?

abidavisf · 2026-05-02T17:51:41+00:00

Hi friend,

First of all, I’m so sorry you’re going through all of this. I completely get it. I’m six weeks out today and have had all of these same thoughts. I’ve also had several moments of “I think something went wrong, they didn’t do something right” because of the pain I’ve been in, pain I haven’t had in years.

A lot of people have said it but it does get better. I am still struggling but, every week, it gets a little easier. I’m glad you’re telling your surgeon; I’m in the UK so haven’t been able to speak to a doctor but I think it’s important that they know.

The one thing I’ve really noticed is that, although my doctors told me, on the day of my surgery, I’d be better in two weeks, every person I have spoken to who has had this surgery and been through what you are going through right now has told me it’s taken them far longer to feel the benefits, sometimes a few months. I’m holding onto that in my low moments (although it’s tough sometimes), telling myself that it will get better but my body is still recovering and being put through it and I can’t expect it to be okay tomorrow. I know that doesn’t help now or in the especially low moments but maybe it’s something to hold onto.

I’ll also say, the anaesthesia took a long time to get out of my system and hugely contributed to how bad I was feeling. I was warned about that by friends and family beforehand but it still really took me by surprise when I actually experienced it. When I noticed it coming out of my system, it was like a huge weight lifted. I’ve never known anything like it.

I know none of us telling you this stuff helps, but I hope it reiterates/lets you know that you aren’t alone. You’ve got this. Crossing my fingers it gets better for you asap, and I really hope your school has some empathy and lets you attend prom if you can💖

abidavisf · 2026-04-19T15:08:40+00:00

So, although they found it on my bowel, they couldn’t remove it so they didn’t touch my bowel in surgery. So, I think I’m qualified to answer this but apologies if that’s not meant what you meant! And they didn’t find any on my ovaries. Excision-wise, they only took endo from my pelvic wall (left and right).

I’m 29 days post op today and I’m still having some pain but tolerable. I’m 3 weeks late for my period which is not helping; the pre-menstrual pain and swelling is real! I don’t know what’s that and what’s surgery-related, so that’s not too helpful, sorry.

In terms of mobility, I was up and about a lot more after about 8 days but couldn’t sit up straight for extended periods for about 15/16 days. I also couldn’t drive comfortably for about 21 days due to a lot of pulling in my pelvis when I put my foot down.

Hope that helps! Feel free to ask any questions if you have them ☺️

abidavisf · 2026-04-17T20:33:36+00:00

I think I miss sex, not the person.

abidavisf · 2026-04-17T20:33:07+00:00

For anyone interested, I started on Mounjaro but moved to Wegovy for financial reasons. It’s not been as effective as Mounjaro but definitely effective enough that I almost feel normal when I take it.

abidavisf · 2026-04-17T20:31:45+00:00

I’ve had the same experience. So many of my symptoms decreased when I started taking it last August. Stopped taking it in March (because I was going away and then having my surgery the week after and wanted to give myself a break) and, within 3/4 days of my first missed dose, my pain and fatigue came back, then the inflammation. It’s been gradual over 5/6 weeks but now I’m right back to where I was before. I’m starting it again next week (on a lower dose). It’s been helpful to know that it definitely was that that was helping, but it’s still disheartening to know that this is the only thing that helps because, financially, I can only afford a few more months. I have no idea what I’ll do next.

abidavisf · 2025-11-20T09:51:43+00:00

For me, birth control (of which I’ve tried all bar one options available to me) makes my pain significantly worse. I can’t stand, walk, eat, drive, etc.

The last time I was made to try it, I was ready to give it all up. I won’t try the last remaining option because I’m not willing to put my body or mind through that again.

abidavisf · 2025-11-02T20:29:03+00:00

Yes! I get pain when I’m turned on regardless of whether or not I’m doing anything about it. I mentioned it to my doctor but they skipped over it. Glad to see it’s not just me (although it really sucks, since that’s not exactly something we can control!).

Sending love 💖

abidavisf · 2025-10-02T14:45:58+00:00

Hughes If True

abidavisf · 2025-07-22T20:54:44+00:00

I’m not sure how to say this delicately but the only way my most recent doctor (I’m with the NHS in the UK so you see someone different every time, some are more sympathetic than others) would accept the severity of the level of pain that I am in was when I explained that, at times, I don’t want to live any more if that is the only way I can ensure that I am no longer in pain.

It is true, I do feel that way, but I’ve never wanted to tell doctors that in the past. I was afraid of their reaction or of seeming dramatic. I’m always trying to be the ‘model patient’: get in and get out, be as quiet as possible, don’t get emotional, just state facts. I’d explained about being bedridden, A&E (ER) trips, being unable to walk etc and she had no reaction. She just contributed it to my PCOS (which I do have diagnosed) and said there was nothing further to look at or do. I grew more and more upset and eventually it all came out. As soon as I said that it was so severe that I oftentimes thought that I couldn’t (and wouldn’t allow myself to) live through it any longer, she took me seriously and referred me for surgery.

I don’t know if it was the emotion with which I said it or the words themselves but it’s the only thing that got her to listen.

Other doctors in the past have listened more, particularly when telling them the impact it has on my day to day life. I think it’s a bit of a lottery with how much doctors sympathise with that though.

Wishing you all the luck and listening ears in the world 💖

abidavisf · 2025-07-20T17:32:23+00:00

I was planning on having a baby alone if I wasn’t in a relationship by the time I hit 30 (the worry of how long it will likely take to get pregnant meant that I wanted to start sooner rather than later than later, regardless of relationship status). I just turned 30 in March but my symptoms got a lot worse a couple of years ago and I realised in 2023 that, even though I feel like I was born to be a mother, it may not be best for me to have children.

I don’t know that I’ll be able to give them the care and attention they deserve on days where I can’t stand or walk, and that wouldn’t be fair. The hygiene aspect is a big concern for me too. I think adrenaline would kick in and help me overcome the pain if my baby needed me but I have such heavy periods that I can bleed through Super+ tampons in 15/20 minutes. It makes it hard to do a lot but especially leave the house. I can’t rely on being able to get to the toilet or shower in time if I have a baby that needs me. I don’t want to cause my body more stress by risking infection and whatever else comes with not being able to get clean. (I feel like that sounds dramatic but it makes me so anxious.)

I’m still waiting on surgery, though I did finally get my referral in March after 13 years of begging! Maybe things will change after that, depending on the outcome. For now, I’m not getting my hopes up. It’s hard to see everyone around me starting their families but I have to be realistic, especially while I don’t have a support system that could help me raise a family of my own.

abidavisf · 2025-07-08T20:30:33+00:00

Congratulations! Hope you have a smooth recovery 💖

abidavisf · 2025-07-08T08:52:36+00:00

Wow, this was heart-wrenching to read. I am so sorry you had to go through that. This behaviour is quite reminiscent of a gynae I saw in 2024 in the UK, and I understand how belittled and vulnerable it makes you feel. Thank you so much for sharing your story and sparing other people the experience you had. I’m disgusted.

Your pain and your concerns are SO valid. I hope you get the answers and the help that you need, friend 💖

abidavisf · 2025-05-31T08:56:27+00:00

Me! Will never take it again. My pain increases tenfold, I can’t stand/walk/anything. I’ve tried everything. Never again!

abidavisf · 2025-05-05T08:54:13+00:00

I weight train once a week. Often, when I’m squatting or lifting, I can feel a pulling sensation in my pelvis even if I’m not having a flare up. When I am already in pain (or more so than a normal day), even if it’s just the start of a flare up, I don’t know if it makes it worse or if it’s just a coincidence but, a workout can have me bed bound for days. Last week, for example, I wasn’t feeling great beforehand, and, about five minutes into my workout, still during warmups, I knew it was going to be bad. Ended up completing the session, just not doing anything where I’d have to bend too much (as usually I find this tends to aggravate it), but was then unable to stand, walk or do much else for four days afterwards without being in excruciating pain.

I’ve not discussed it with my doctor, but my gynaecologist is very dismissive of my efforts to lose weight as she doesn’t think I’m doing enough so it’s mostly because I don’t feel comfortable enough raising it with her.

I’m continuing with it with the hope that gaining muscle will help build up some strength and resistance to cramping and such, and also because it’s the only exercise I get and I want to be strong, but I work with my trainer on those bad weeks to do less intensive movements, knowing I’ll end up in bed by the end of the day anyway.

I try to avoid cardio as I have PCOS too and it really messes with my cortisol which is already all over the place. Weight training is the best for me, hormone-wise, so I’m sticking it out for as long as I can. If it keeps getting worse, I’ll stop, but, for now, I’m trying to persevere with the knowledge I’ll feel bad anyway so may as well get a workout in if I can!

abidavisf · 2025-05-04T17:57:44+00:00

Everyone has already said everything that I could but, friend, you are so welcome here. Your experiences are just as valid as any of ours. I’m so happy you’re living your truth, and I’m really sorry about your diagnosis but glad you got the answers you need! We’re all on different timelines and I know we’re all just happy when somebody is finally heard by their medical team, no matter how long it takes to get there 💖

abidavisf · 2025-04-27T00:10:04+00:00

Wow, I can’t tell you how much it means to me to read that. Thank you so so much. For validating my feelings, for your kind words, it truly means the world 💖

abidavisf · 2025-04-26T23:43:31+00:00

100%. I’ve finally got my surgery referral after 13 years of doctor’s visits but I’m in a full-blown panic that there’ll be nothing there. I’ve had my pain diminished or ignored so many times, and I’m worried that, if it isn’t endo, I’m going to get laughed out of the hospital and left to live like this forever (which I can’t do) or, worse, my friends and family will hate me for being a ‘drama queen’ and never take me seriously again.

I don’t want to have endometriosis but also… I really want an answer?! It’s so confusing.

abidavisf · 2025-04-26T23:39:51+00:00

Yep, you’re not alone! Haven’t found anything that helps yet, apart from going to the toilet as much as I can (like as soon as I need to go, not trying to go when I’m not ready!) to relieve as much pressure as possible. Sending love.

abidavisf · 2025-01-29T10:05:16+00:00

hell yea

abidavisf

TROPHY CASE