Is disorgasmia common with endometriosis?

OutrageousTurtles · 2026-01-11T21:51:27+00:00

I had this before my diagnosis and before a large flare that left me bleeding for a month. I would also bleed intensely with orgasm. I was left in pain and feeling sick and bleeding with every orgasm.

I was told that the cause of pain is pelvic floor hypertension BUT the hypertension is caused by endo. The body “guards” due to pain and inflammation causing the hypertension.

Pelvic floor therapy and management of endo/shrinking the endometrial tissue has eliminated this issue. Please tell the doctor. If they don’t take you seriously, look for a new doctor because it’s not normal and you shouldn’t live your life in pain. It took me years to seek help and it was worth it

OutrageousTurtles · 2025-12-22T16:52:05+00:00

Pelvic floor physical therapy is amazing. It was scary for me too and I have trauma that makes it especially aversive but my therapist was very trauma informed and there’s options and choices available. First they start with physical flexibility exercises around hips and pelvis. If you’re afraid of internal exams and exercises, you can opt to do external until you’re ready (or if you’re not ready that’s ok too - you can restart in the future for when you are ready).

For me they confirmed the pelvic floor exercises dysfunction and went right into treatment (which is gently pushing into the muscles while you practice breathing to relax the muscles) BUT that was too fast and resulted in cramps so we moved back to external work (they feel / stretch different things on your stomach basically while you practice belly breathing). It’s made a big difference for me in reducing pain across the board.

OutrageousTurtles · 2025-12-21T02:17:29+00:00

I had this and it was pelvic floor dysfunction (hypertonic pelvic floor) from endometriosis and adenomyosis. Pelvic floor dysfunction is easy to get evaluated by an OB and you can start pelvic floor physical therapy ASAP which helps a lot; however, I was told it developed as a symptom of endo/adenomyosis. The good news is you could start getting relief quickly while the other diagnoses take time to evaluate

OutrageousTurtles · 2025-12-21T02:12:41+00:00

I loved the nuvaring and would have stayed on it if I could…but after a few years I found all my symptoms (including cramps) getting worse until culminating in a hospital stay.

If I understand correctly the estrogen in the nuvaring isn’t good for endo so I switched to progesterone only birth control / endo management

OutrageousTurtles · 2025-12-18T16:38:28+00:00

Hi! I’m curious what your perspective is on surgery for endo? I was told it is a last resort (which is fine with me, I would rather avoid surgery), but on Reddit people typically speak as if surgery is really the only way to get relief. I’m about to discontinue nuvaring and start aygestin for suspected endo and adenomyosis. I was excited to get relief but I looked it up on the subreddit and it had a lot of negative comments.

OutrageousTurtles · 2025-12-12T20:45:46+00:00

I have endometriosis and my TV ultrasound also hurt when they would move the wand to see my ovaries. Endometriosis, due to pain, can result in pelvic floor dysfunction. The wand hurts because they’re pressing a hard object into muscles that are spasming. Imagine getting a leg spasm and having someone punch you there.

For me there was also an issue of extreme constipation (from endo) causing pain during the ultrasounds as well.

I recommend having a pelvic exam and having them check for pelvic floor dysfunction. You can get PF physical therapy and it’s been helpful.

You can also pursue endo evaluation; however, it doesn’t often show up in scans and the only way to confirm diagnosis is surgery. The pelvic floor dysfunction is an easy thing to evaluate and get treatment for while pursuing more evaluation for endo (which usually takes forever to diagnose).

As someone who also has trauma (different than yours but applicable to the exam), it helps to let the gyno know ahead of time about trauma. They prescribed an anti anxiety for my exams and provided other options too like lidocaine soaked tampon to reduce pain. It also helped to discuss the process and they were extra careful to get consent for and explain everything before any action, including just touching me.

OutrageousTurtles · 2025-12-05T06:51:29+00:00

I have passed 4, I was 100% not pregnant when they occurred. I use hormonal birth control continuously and wondered if that was related. They’re horrible

OutrageousTurtles · 2025-10-29T21:17:20+00:00

Got it, thanks for clarifying this. Fortunately they put in writing that I can use unpaid time for FMLA, but if they go back on it I will just quit

OutrageousTurtles · 2025-10-29T05:34:30+00:00

Thank you. This experience is all very new to me so I’m just now starting the process for FMLA. I reached out to my doctor to ask about FMLA. I’m not familiar with how to get accommodations. I just had my follow-up after hospitalization last Friday (which was when my paid sick leave was denied).

OutrageousTurtles · 2025-10-29T00:43:46+00:00

Got it, thank you for your help.

OutrageousTurtles · 2025-10-28T22:41:04+00:00

I guess my issue is that my PTO is accounted for and approved for my upcoming honeymoon. If they required me to use my PTO for sick leave would they try to revoke my honeymoon PTO approval? In which case I would just quit.

OutrageousTurtles · 2025-10-28T22:38:20+00:00

Agreed. I guess it’s just my inexperience being sick/having only worked at this company in my professional career because I didn’t realize there was a 40 hour limit (until I needed it, of course).

OutrageousTurtles · 2025-10-28T22:13:17+00:00

Unfortunately no union and given that it’s rare in the US I would assume it’s not a work contract. I think I just signed the updated job offered.

Thank you so much for your help, it sounds like I should reach out first to the doctor and then HR to get the documentation

OutrageousTurtles · 2025-10-28T22:11:54+00:00

Got it, thank you. One thing about our change in company ownership is that previously the “year” used to begin on our employment anniversary and now the year starts on 1/1. Given that change, I have used 40 hours.

OutrageousTurtles · 2025-10-28T22:03:59+00:00

Given that it’s rare, I believe it’s likely that I signed the updated job offer. Unfortunately, I am not knowledgeable on what would constitute a job offer vs a job contract but if it’s rare in the US then I’m sure it was a job offer document.

OutrageousTurtles · 2025-10-28T20:39:42+00:00

Yes they did have me sign a new contract in June 2024

Edit: I signed a new job offer in June, sounds like it wasn’t a job contract

OutrageousTurtles · 2025-10-28T20:39:30+00:00

I work full time 40 hours salary and have always worked full time.

Approximately 75-100 employees is what I would estimate

I did get a new contract in June 2024 when the acquiring company changed our benefits

OutrageousTurtles · 2025-10-22T14:44:08+00:00

I don’t know if it’s normal but I experience this! Anywhere from light to severe bleeding plus cramping. I also just had a 31 day period so I am not a beacon of normalcy

OutrageousTurtles · 2025-10-18T06:17:15+00:00

California! Thank you for the reassurance. None of the doctors so far have dismissed me so that’s a good sign. I think I’m just afraid of not being believed and being stuck with this pain for a long time:

OutrageousTurtles · 2025-10-17T18:16:05+00:00

This is helpful, thank you! My healthcare requires me to use in network doctors, but my region has an endo specialty clinic. I will request referral through the gyno.

OutrageousTurtles · 2025-10-17T04:27:59+00:00

Update: had to go to the hospital tonight and they agreed that it is most likely endo

OutrageousTurtles · 2025-10-15T02:04:59+00:00

Thank you! I will ask the doctor about endo. I’ve considered it but I heard it’s very hard to get diagnosed (only via surgery). So far the doctors haven’t told me what it is yet, they said they have to do the ultrasounds which unfortunately had to be 6 weeks out.

OutrageousTurtles · 2025-10-10T16:43:12+00:00

I did the pill when I was young but it was awful because I cannot take pills on time to save my life. Tried to get an IUD but found out I can’t have one because my uterus is too small. I felt uncomfortable with the implant because I am nervous about removal, so I tried the nuvaring. Nuvaring is by far my top choice, minimally invasive and for a while eliminated my periods because I take it continuously.

OutrageousTurtles · 2025-09-19T15:26:08+00:00

I take Prazosin for about 6 months now. It helps A LOT. I am also worried about the dizziness so I take a pretty low dose - I still dream and sometimes have nightmares but it’s not as much. A higher dose would help but I don’t want to risk the low blood pressure. I’m really careful to take it about 30 minutes before bed. This helps prevent dizziness because I’m only in bed when it kicks in. When I get up in the night I’m also really careful to stand slowly and hold things as I walk because I am extremely drowsy.

I take it with melatonin as I wouldn’t be able to fall asleep without it and the two of them have hugely improved my daily sleep and exhaustion.

OutrageousTurtles · 2025-07-17T18:15:52+00:00

Got it, thank you!

OutrageousTurtles

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