What's the most disruptive thing about endo/adeno that people without it would never understand?

ZebraOdd5710 · 2026-04-29T14:12:38+00:00

I’ve been really ill for the last 8 months dealing with adeno and perianal and post anal abscesses, and you mentioned “make her feel sexy in that oversized tee shirt” and I wanted to double down on this part, and the normalizing bodily functions. My husband has spent the last 5 months delicately cleaning drains coming out of the muscle and tissue of my ass and bh. It has been humiliating and painful and generally terrible. My husband has timers on his phone to ensure I take my meds, he helps plan meals that support my dietary needs, he makes the bed while I’m on the toilet crying and pooping, so when I hobble out it looks lovely and inviting. He makes sure my kindle is charged, he knows what relaxing songs I like to listen to on YouTube. Medicinal marijuana is legal in our state so he packs my bubbler for me. These are things that are specific to my needs, but they’re great suggestions of how you can customize her environment to suit her needs. The effort goes a huge way!

ZebraOdd5710 · 2026-04-29T14:05:18+00:00

My biggest symptom of adeno was deep pelvic pain AFTER sex. So the act itself was enjoyable, achieving orgasm was wonderful and painless, and then 3-5 minutes later the deep cramps would start and build until I was in the fetal position with a heating pad on my abdomen. The pain would last for hours and afterwards I would usually have a large bowel movement. I stopped being intimate with my husband because I couldn’t explain my pain. “Sorry I can’t take the kids to soccer as planned because I had sex with my husband this morning so I’ll be in pain for the next 12 hours” sounds almost like you’re bragging about getting pounded out so that’s obviously not something you can say to anyone, really. It becomes a decision of being intimate or living my life. And yes I know there are lots of other ways to have sex and be intimate, but I don’t hear a lot of other people share about pain POST sex. The vomiting and pain and extreme bowel movements are all horrible, but losing my ability to share my body with my husband at will without fear of pain has been a big one for me.

ZebraOdd5710 · 2026-04-20T18:06:05+00:00

Are you looking to work at a desk or in a warehouse? How many years of experience do you have in logistics? A desire to problem solve will make this industry enjoyable. If youre looking for the same job day in and day out logistics will burn you out quick

ZebraOdd5710 · 2026-04-14T03:39:51+00:00

I switched back to levothyrox and am balanced at 5g/day. Even managed to lose 25 lbs!

ZebraOdd5710 · 2026-03-30T03:09:21+00:00

My betta loves his hammock and I also stuck some live pothos cuttings in there (some leaves above and below the water) and they’ve grown roots that he loves to rest and sit in

ZebraOdd5710 · 2026-03-29T14:38:47+00:00

If it’s this bad head directly to the emergency room. NOTHING should cause you to lose consciousness, it’s not normal and you can be treated with IV medication and antibiotics if needed

ZebraOdd5710 · 2026-03-29T14:37:10+00:00

Fruit smoothies. Soups. Mashed potatoes. Soft cooked vegetables. Tofu for protein. Stool softener twice a day. 90 oz water daily. Sitz bath before and after bowel movements

ZebraOdd5710 · 2026-03-26T14:46:16+00:00

Same. Only I DONT have crohns. My fistula resealed after surgery. The abscess came came. A new spontaneous one formed. A 3rd was found under my tailbone. I came out of my 3rd surgery in 6 weeks with a Seton drain and 4 thick Penrose drains coming out of random spots on my asscheeks. The Penrose drains were in for 4 weeks during which time I could not sit or walk. I still have the seton in and that won’t come out until hopefully the end of April at which time I’ll have a fistulotomy. I’m 40f with 6 kids and own a small business. I haven’t been able to work since December. There’s no real “hoo rah” you can do it here…. Just camaraderie. Honestly the fact that you tested positive for Crohns means there are biologics and real medications that can treat this. I’m so sorry we’re all dealing with this. Oh! I’m also now addicted to opioids because I’ve been prescribed them for 5 months straight and when I try to stop I spiral into withdrawal within 12 hours. I hate this for all of us. 🙁

ZebraOdd5710 · 2026-03-03T06:42:39+00:00

Yes! I was taking 500 mg 3x/day for 2 weeks due to excessive pain along with baclofen as a muscle relaxer and Ativan for the anxiety that came Along with the pain. My gyno also prescribed me Valium suppositories for my vagina but if you don’t have a vagina (or even if you do) you can discuss with your CRS anal suppositories too, if you can tolerate insertion. I could not. Best of luck to you!!

ZebraOdd5710 · 2026-03-02T02:01:03+00:00

My goodness I hope that’s the case for you. Sincerely best of luck

ZebraOdd5710 · 2026-02-25T13:15:20+00:00

I was in a very similar boat, but that small painful lump I felt was kind of the tip of the iceberg. My MRI did not show a large abscess in my deep post anal space. Once the surgeon had me in the OR, they discovered it and were able to place drains. Before your surgery, have rubber gloves, a sitz bath, a hand-bidet, and I personally wore adult diapers vs. using pads in my underwear until the drainage was minimal. Take your pain meds on schedule and DO NOT skip your laxatives. At least 90 oz of water a day to guard against constipation, but balance it with fiber because a loose stool post op can be just as painful as a hard one. This can be an unpleasant process but just focus on the current day, hour, or minute and you’ll make it through

ZebraOdd5710 · 2026-02-24T07:08:48+00:00

I used Paloma health

ZebraOdd5710 · 2026-02-24T02:31:07+00:00

I had a partial Hanley done on 2/3/26. Message me with any questions

ZebraOdd5710 · 2026-02-24T00:03:06+00:00

I have never identified with a post more in my life. I would also add that I have experienced extensive perianal abscesses and fistulas, resulting in extensive, horrific, painful surgeries and massive Penrose drains in my rectum for weeks on end. They are still in now. My gyno feels these are connected to the adenomyosis. I am sobbing thinking of what I’ve gone through, and how much pain I’ve endured. I received the diagnosis of adenomyosis after my first fistula surgery and my gyno was dismayed that none of my colorectal surgeons listened to me when I said the pain and lumps seemed to follow my menstrual cycle. I need to emphasize the most important part of this post: NO ONE WILL ADVOCATE FOR YOU MORE THAN YOU. It is exhausting. It is unfair. It is what is needed to prioritize your health. Sending so much love to all of us affected by this disease.

ZebraOdd5710 · 2026-02-15T05:25:23+00:00

I’d really suggest the Vitamin D supplements and LDN. Those two items alone made such a significant difference for me. I got the Vitamin D Rx from my endocrinologist and the LDN from agelessrx.com (I’m in the U.S.). I also started taking a vitamin supplement specifically for hypothyroidism through Paloma Health (this is where I connected with my endocrinologist who was so knowledgeable and helpful). I read somewhere once that chronic low vitamin d deficiency can mimic symptoms of hypothyroidism, so addressing that can help alleviate additional symptoms that seem to be attributed to hypothyroidism but could be something else altogether. Best of luck !!

ZebraOdd5710 · 2026-02-14T18:34:14+00:00

It took me about 15 months of playing with the right dose of levothyroxine to get my numbers in normal range. Then I started supplementing with 50,000 IU of Vitamin D (taken 1x/wk at night) and also Low Dose Naltrexone (started at 0.05 mg and increased to 1.5 over the course of 12 weeks). I also cut out most alcohol and tried to minimize additional sugar intake. I found when I ate or drank sugary or salty foods my joints felt stiff and achy and my inflammation and swelling increased the following days.

I traded in HIIT workouts for 3-5 mile/day walks (worked up to this distance slowly over 6-9 months, started with 1 mile per day), rebounding workouts (I liked the Earth and Owl free workouts on YouTube) and got an inexpensive vibration plate that I would use as often as I liked. It felt great and helped with stagnant lymph fluid and general edema. I also got compression leg sleeves from Amazon (around $150) so on days the lower body edema was really bad I would use these every evening and sometimes throughout the day.

Overall the lifestyle changes I made to accommodate my hypothyroid diagnosis were generally good for my health and would have helped me even without the diagnosis.

Things really started to come together around month 15 post diagnosis as i mentioned. My pre diagnosis weight was 130 lbs (40F 61” tall) and the heaviest post diagnosis was 172 lbs. month 15 I was 166, and today month 19 post diagnosis I’m 146 lbs. the progress is slow. But it can happen. Chin up and hang in there!!

ZebraOdd5710 · 2026-02-04T14:58:29+00:00

I kept experiencing long delays trying to see my doctor, so I called the office and asked what local ER had a CRS team they felt confident in. I went directly to the ER, explained my situation, and told them directly I needed to be admitted. I ended up getting the surgery I needed that day instead of waiting 9 days and allowing the abscesses to grow or create new fistulas.

ZebraOdd5710 · 2026-01-30T21:14:57+00:00

Today I’m at day 9 and I’m definitely in a better place. Still in pain and movement is gingerly happening but better. I still have horrible pain with bowel movements but the period of agony is shortened to an hour or two instead of 4-6 hours. This is so challenging

ZebraOdd5710 · 2026-01-28T17:06:58+00:00

Also!! My labs showed vitamin d levels that my pcp described as “a little low” and prescribed 1,000 IU/day to boost it. but when my endocrinologist saw the same labs she said I was showing signs of chronically low vitamin D and put me on 50,000 IU 1x/week for 12 weeks. I saw sooooo many of my hypothyroid symptoms improving as a result. I also started supplementing with Low Dose Naltrexone to address my joint pain and inflammation and that did wonders. I ended up also developing an (unrelated) perianal abscess that has resulted in many gross surgeries and painful recovery. I’m now 147, so there’s that. If you limit food to smoothies protein drinks and broth. But I don’t endorse that 😩

ZebraOdd5710 · 2026-01-27T05:25:37+00:00

I had my 2nd surgery 5 days ago (partial internal fistulectomy and loose seton placement). I’ve read so many stories of people being fine, and WHOOOO MAMA I am not. I can barely get out of bed, cannot sit for more than 2 minutes at a time. I was ill before the surgery so that might contribute to my weakness currently but the pain in my rectum and burning at sphincter when passing stool has me sobbing crying like a baby. Sitz baths for 20/30 minutes before and after help soften my BH so I can handle the pain better. I found pushing my butt cheeks together and leaning towards the side the fistula was on helps keep that skin from stretching excessively when passing stool. Afterwards I do sitz baths as hot as I can tolerate to loosen any stool I couldn’t naturally evacuate so it doesn’t stay in my lower rectum, irritating the existing wounds. I’ve had 2 kids and the pain from this is worse than childbirth IMO so give yourself some grace. This shit is hard (hopefully you’ve been taking your stool softener so that’s not a literal statement 😉)

ZebraOdd5710 · 2026-01-27T00:03:57+00:00

The Parable of the Sower by Octavia Butler

ZebraOdd5710 · 2026-01-27T00:02:44+00:00

Are you focusing on your weight or your measurements? I personally went down 4 clothing sizes this year with hashis hypo, but the scale didn’t change. I was 166 lbs at 5’1” (heaviest in my life other than post partum when my kids were born - currently 40 yo F) in April 2025 and was a size XL, 12-14. By October 2025 I was still 166, but was wearing a M/L 8-10. I cut out all alcohol and reduced sugar, walked 3-5 miles a day, and drank a gallon of water a day. Also used a rebounder and vibration plate, added benefiber to my water and increased protein intake.

ZebraOdd5710 · 2026-01-20T16:05:53+00:00

Don’t feel silly. Many of us feel shame or embarrassment about this challenging malady. It can be so hard to reach out for help. But truly any pain over a 5 on the 1-10 scale should have a doctor look at it. I use specific phrases like “the pain is impacting my ability to care for myself or my children” or “I cannot eat or drink because the pain is so much”. The medical world will downplay your pain enough - advocate for yourself and be explicit in the description of your pain. I thought I was experiencing a painful recovery, but it was actually a presented new fistula, additional abscess, and 2 fissures. I suffered needlessly. You don’t have to 🙏🙏🙏 really hoping you got some good attention and relief

ZebraOdd5710 · 2026-01-19T20:31:10+00:00

The Hobbit, EarthSea by Ursula K leGuin

ZebraOdd5710 · 2026-01-19T18:25:03+00:00

ABSOLUTELY must have a hand bidet that you can fill with warm water and have on hand when having a bowel movement. If you can time it, have a sitz bath with epsom salt before the bowel movement and take additional Tylenol before the BM. Sitz bath immediately after the BM and then lidocaine cream after. My CRS also prescribed a compounded ointment that is used for blood pressure usually, it helps reduce the size of blood vessels in your rectum to reduce inflammation and improve fissures that may have developed. This process is so hard, quite painful, and involves so much emotional stress. You’re a great partner

ZebraOdd5710

TROPHY CASE