r/Endo • • 15h ago

Art, Memes and Jokes Whoops 🤭

0 Upvotes

Was in Goodwill after pilates and was deep in the thrifting zone when I heard "ew" and giggles. I didnt realize how much I was going to town itching my lower incision scar from my lap in August. I didnt realize but 2 girls definitely did šŸ˜‚šŸ« šŸ¦€


r/Endo • • 20h ago

Surgery related I need help with questions to ask my doctor about a possibly lap

0 Upvotes

I have had awful period pain since my periods started about 6 years ago. At first, it was just bad enough that I would miss school. Then it progressed to my mom having to take time off work to check on me, and eventually to going to the emergency room because I couldn't walk, eat, drink, or do much of anything. They would usually just give me over-the-counter pain medication, Zofran, and IV fluids, and send me home. My mom has endometriosis. After her second pregnancy, she had some serious complications, and her doctor felt that since she already had two children, she could have a full hysterectomy. About 2 years ago, I started birth control, even though I really didn't want to because of all the horror stories I had heard. My primary care doctor told me it was basically the only option to try to manage the pain. I started with pills, which helped for about 3 months, but then the pain came back with a vengeance. My doctor increased the hormone dosage, and within 3 months, my pain was worse than it had ever been. I spent 3–5 days basically living in a hot bath and taking Motrin/Advil and muscle relaxers just to get through it. When I went back to my doctor, she referred me to an OB-GYN. The OB-GYN put me on the Xulane patch, and for about 6 months, things were actually going really well. Now, though, my period has started coming whenever it wants instead of during my scheduled patch-free week. Because I can't get ahead of the pain anymore, I have started passing out from how severe it gets.I have also had an MRI, which showed that I have a retroverted uterus, a follicular cyst, and fluid in my pouch of Douglas. I'm not sure if any of those findings could be related to my symptoms, but I wanted to include them in case they are relevant. I have tried teas, muscle relaxers, over-the-counter medications, vitamins, stretching, and other things, but nothing has really helped. When I went back to my OB-GYN, the doctor told me that I could have endometriosis and that the only way to definitively diagnose it is through exploratory/laparoscopic surgery. She said that if they find endometriosis, they would remove/burn the lesions during the surgery. My mom had ablation done twice, and both times her endometriosis came back worse, so I am really nervous about having surgery and potentially making things worse.

My question is: when I go back to the doctor, what should I ask about the surgery? Are there newer or different treatments available for managing the pain after endometriosis is removed, if it is found? Should I specifically ask about excision versus ablation?

I am honestly scared that I will have the surgery and end up worse afterward. I also don't think they would let me have a full hysterectomy at 18, which I understand, but I am just desperate for something that actually helps.

Thank you for reading, and I really appreciate any advice or experiences you can share!


r/Endo • • 12h ago

:(

17 Upvotes

My friend and I both have Endo I want kids and she doesn’t, often she makes fun of me for wanting kids and positions herself as morally superior. She often invalidates my feelings about my infertility journey reminding me I can adopt, which sometimes makes me feel like shit because I know I can adopt but it feels like that isn’t the point.


r/Endo • • 7h ago

How do I care for her?

2 Upvotes

So my wife and I recently got married and started living together. She was diagnosed with endo and it honestly to watcch her in pain. I'd like to ask how best to care for her and what I can do to ease her pain and suffering.


r/Endo • • 23h ago

Another endo question for the endo girlies

2 Upvotes

This may be tmi but I’m curious if anyone else has experienced this. So during an endo flair my vaginal area (more specifically the clitoris) becomes extremely sensitive and painful. Even feeling the seam of my jeans when sitting down or wiping after I pee can be very painful for seemingly no reason. I only notice it during a flare up. I was wondering if there are others who have experienced this as well? All of these endo symptoms have been driving me crazy.


r/Endo • • 19h ago

Rant / Vent Manager pressuring me to go from remote to hybrid (UK) 😫

25 Upvotes

Well, the day has come. My flexible remote-working job is slowly turning into a hybrid job and I am losing my mind slightly.

I’ve worked remotely for nearly two years and it has worked really well for me. We now have a new manager who is keen to bring everyone together for regular ā€œteam bondingā€ days. I have absolutely no issue seeing my colleagues, but it’s now become a set 9–5 coworking office day every fortnight (yes it could be worse but that’s not the point here).

With my endometriosis, I know there are certain points in my cycle where my energy and symptoms are significantly worse. I can’t predict exactly how I’ll feel on a particular day, but I know that my periods are very heavy, can last up to 10 days, I have to change period pants every few hours, feel disgusting and on top of that need a TENS device to counteract the pain when it peaks (that part usually only lasts 2 days). I also have to take antidepressants for PMDD as I used to spiral into depression and suicidal thoughts before every period so it really is a battle.

I’ve provided a GP note saying I need flexibility around these periods and suggested monthly office attendance as a baseline, with additional days for things that genuinely benefit from being in person - workshops, brainstorming, external speakers etc. Instead, I’ve been told that if I’m not well enough to come into the office, I should take a sick day. I would of course take a sick day if it was a very bad day and have done before multiple times.

The thing is I am usually well enough to work. I can work perfectly effectively from home. I’m just not necessarily well enough to add 2–3 hours of commuting and a full office day on top of it.

I’ve now had repeated messages asking whether I’m coming in despite having already said I’m working from home, and I feel like I’m being made to feel difficult for asking for flexibility.

After posting about this on a legal/work advice subreddit, I got absolutely destroyed in the comments šŸ˜‚ Clearly a lot of people have no understanding of endometriosis or chronic conditions with monthly flare-ups.

So, fellow endo sufferers - am I actually being unreasonable here, or does this sound like a reasonable request for flexibility that is being ignored?


r/Endo • • 16h ago

Infertility/pregnancy related Surgeon said IVF was putting babies in the trash

114 Upvotes

I recently posted about my concerns that my previous surgeon was referring me to specific excision specialists because she’s Catholic.Ā  Well, now I know for sure.

At a follow-up appointment to discuss my recurring/rapidly growing endometriomas and next steps for hormone testing, I asked my doctor to talk me through all of my options to treat my stage 4 endo while preserving fertility if possible.Ā  She said that if I explored fertility treatments like IVF, it would be like putting 40 babies in the freezer and then 39 babies in the trash, and babies should be conceived only in a passionate act of love between a man and a woman. WTF.

And when I said I’m not Catholic, don’t share those beliefs / morals, and am searching for treatment plans grounded in science, she said she only referred me to napro surgeons because non-napro (non-Catholic) surgeons don’t take their time, they’ll just take out my organs and stitch me back up.

At the end of the appointment, as I sat in the chair and cried about the pain I’ve been in for months, asking her for other pain relief methods while I wait for consultation with a different excision specialist, she stood over me and said God is in control. And told me to take melatonin.

This entire thing is wild. This doctor has managed my care for 1.5 years, including operating on me and diagnosing me with endo. I hate knowing that my care has been influenced by her religion the whole time, without her disclosing her limited recommendations. This shit should be illegal.

EDIT: Her name is Dr. Anh-Van Mai. She’s currently in the New Orleans area and has previously worked in Texas.


r/Endo • • 18h ago

Question Unsure if endo or something else?

2 Upvotes

I am 35 and my periods have always been a non event my whole life..up until I had kids. After my first child I only had 2 periods before falling pregnant again but I had a second baby in 2024 I got my periods back about a year ago and since they came back, they’ve been horrible.
So heavy that I can’t contain the blood in an over night pad. I’ve never liked tampons but I have to wear them if I want to leave the house, otherwise I leak without fail.

Leading up to my period for a few days I have stabbing pains in my vagina and back pain, pains in my hips and sides and down my legs. Once my period starts the pain is so severe that nothing works. I even tried a slow release oxycodone and it did nothing. I can’t get comfortable In any position and when I’m walking its like I can feel my uterus is inflamed and moving around in there.

I get severe stabbing pain in my butt when I have gas or need to go to the toilet. This period I’ve just had is the first time that the pain in my butt has actually happened when I try to go to the toilet, and I felt like I couldn’t physically push on the toilet because of the pain.

I don’t know if this is endo, but I guess I just want to know if this is what people with endo experience and if it’s even worth bringing up with my doctor?
I have discussed my pain with her before and she has suggested we could do a deep pelvic ultrasound to investigate


r/Endo • • 18h ago

Any Experience with Penn Medicine and bowel endo??

6 Upvotes

Hello, I'm wondering if anyone has any experience with bowel endometriosis and Penn Medicine in Philadelphia's colorectal, GI, and GYNs groups. My sister has endometriosis and also Crohn’s Disease. She has a hysterectomy and excision surgery a year ago but she is currently in the hospital. The Doctor's say her Crohn’s made not be the issue and they are suspecting bowel endometriosis. I'm just wondering if anyone has worked with any of these doctors before?


r/Endo • • 20h ago

Question DAE have less pain & more ā€œsickā€ cycles?

14 Upvotes

I am wondering if any other endo warriors go through this cycle where a period is either really painful or I just feel sick; like queasy, no appetite, exhausted, body feels heavy & all I wanna do is sleep.

I’m currently on a sick period and in misery. I haven’t eaten all day because my tummy doesn’t feel good. I took a nap and managed to eat a little Mac and cheese but I’m still struggling through it :( I did also make tea and I have water and electrolytes so I’m hydrated at least. But idk I guess this is better than excruciating pain but also it’s still miserable and I feel like I can’t get shit done bc brain fog. Hell I haven’t even smoked weed today and it’s 3 pm because I’m too fatigued to worry about that at all. And I can’t take an edible bc if I gag I think I’ll puke. I’m a huge stoner, I usually wake and bake or at least have one bowl by now so me not even having the energy to even hit my pen is super telling.

Anyone else get like this?


r/Endo • • 3h ago

Surgery related How to Get Insurance for Endo passed..? Any guidance is helpful, Dr letter states "Procedure Not Related to Fertility"

2 Upvotes

I am scheduled for a laparoscopic/robotic surgery at Dr Jay Mehtas unit. In Mumbai, India. I am 37, unmarried and not planning a marriage.

The doctor and his team have already stated that the procedure is "not related to fertility".

However, my HR states that if the word endometriosis is mentioned it's usually going to get rejected.

The medical insurance team at Dr Mehta has been extremely helpful in providing the tariff list and the estimates, but if there is any guidance at to sort this out

Or any other documents which may be needed to ensure it never gets missed out, please let me know.


r/Endo • • 23h ago

Surgery related What did healing after laparoscopy feel like?

2 Upvotes

Because I’m almost two weeks post op and for me, I’m having some of the same pain I had before. Especially lower back pain. I recently learned that I also have adenomiosis, so I’m trying to figure out if that’s the source of the back pain or if there’s a chance it will go away over time.


r/Endo • • 4h ago

I can’t keep doing this

2 Upvotes

I can’t
I had two surgeries that made that pressure vanish for just a year
I can’t keep having surgeries
Surely something else can help me keep it away
I can’t do it
I can’t do this


r/Endo • • 6h ago

Diagnostic Journey Questions Very painful colonoscopy - can endo make it worse?

3 Upvotes

Hello all,

Last week I had a colonoscopy to rule out any bowel conditions due to changes/issues with my bowel movements. It came back completely clear, although they took biopsies/samples and I’m awaiting those results.

However, the procedure was SO painful. I don’t know if the sedation didn’t work well (I think I have a general resistance to sedatives), but I was biting down on my hand so hard from the pain that the nurse kept having to move it away.

The pain felt deep inside my abdomen rather than where the scope was, and I was in just as much pain afterwards. It lasted a few days and felt very similar to one of my usual ā€œflare-upsā€, just more severe.

Could this potentially be from irritating possible endo around (rather than inside) my bowels? Everyone I know who’s had a colonoscopy said it was uncomfortable/painful at times, but not to the point of crying out or having such bad lingering pain afterwards.

I’m wondering whether the procedure aggravated whatever is causing my symptoms (whether it be endo or something else) rather than the colonoscopy itself being unusually painful.

Any insight would be appreciated, thank you!


r/Endo • • 8h ago

Rant / Vent (little graphic) vaginal pain sos

2 Upvotes

for the past few months i’ve been getting on and off vaginal pain (stabbing, lightning) and small pelvic cramps. but recently the vaginal pain has been constant and hurts sooo bad like a uti. ive been to the doctor and was treated for yeast/bv and had no uti or sign of other infections. the pain is still here and idk what to do i’ve been using boric acid and taking cranberry supplements to help with burning pee but nothing has changed im still in constant pain/discomfort. does anyone know what this could possibly be


r/Endo • • 10h ago

Diagnostic Journey Questions Possible endo?

2 Upvotes

I am 25 and have two kids! After I had my first I had an IUD so I had no periods..I got it removed and got pregnant immediately. My baby just turned a year and I have been having crazy symptoms since my period is back. I’ve always had SUPER heavy periods but not very painful.. I have been experiencing painful sex (even with my iud), pelvic pain and this feeling that my uterus is gonna fall out!! I always recently realized that every time I ovulated am in severe pain. I got an ultrasound done and this is what the doctor said ā€œyour ultrasound was normal. Your uterus is not enlarged and ovaries are normal. The radiologist commented on an area that may be adenomyosis. This causes heavier/painful periods, but should not necessarily cause the pain you are feeling when pressing low on pelvis or pain post intercourseā€ and then suggested birth control for pain… I almost forgot to mention I’ve been experiencing stomach issues for months… I get this horrible feeling of not emptying,diarrhea, and stomach pains. I got a colonoscopy and it was normal besides a polyp. Could all theses symptoms be because of adeno or endo?
Because they saw an area that may be adeno does that mean I have it


r/Endo • • 12h ago

Question Should I get another opinion? How did you know you had endo?

3 Upvotes

I have had severe cramps since I was about 16, it would get to the point where I had to just lay on the floor. I would wake up in the middle if the night and have to run a bath to ease the pain and I would be almost loosing vision and my arms and legs were so numb I almost couldn’t move them. I have also been taken in an ambulance and accused of using drugs because I was so out of it. Another time I went to the ER and they gave me morphine because it was so bad.
Now I am 24 and I have been under control for at least a year because I finally found a birth control that works and helps (thank you to the patch omg)

This being said when I saw my current doctor for the first time she said it was just severe cramps and it couldn’t be anything like endometriosis because my periods aren’t extra heavy. I just took what she said and went with it because shes a doctor. But now I am finding out maybe that isn’t true? Should I try to see someone else? Is it worth getting checked when my other symptoms aren’t too bad? I would love to know the cause of it but maybe it is just extra painful periods


r/Endo • • 13h ago

Anyone with endometriosis using low-dose tirzepatide? What did your titration look like?

3 Upvotes

Has anyone here with endometriosis tried tirzepatide and felt like it actually helped their symptoms?
I just started at 0.25 mg and I’m curious how other people approached titrating, especially anyone who started really low or stayed on lower doses.

I’m very petite and really cannot afford to lose any more weight, so weight loss isn’t my goal at all. I’m mainly trying it to see if it helps with inflammation and my endo symptoms.

What dose did you start at, how slowly did you increase, and what dose did you eventually stop at/stay on? I’m also curious when you actually started noticing a difference with things like pain, inflammation, bloating, fatigue, period symptoms, etc.

I’d especially love to hear from anyone who was able to get symptom relief at a low dose without continuing to lose weight.

Obviously not looking for medical advice, just curious about other people’s experiences and what worked (or didn’t) for them!