After 5 years in and out of more hospital, doctor, and specialist visits than I can count being dismissed, gaslit, and told its just IBS, they finally decided to do an MRI and FINALLY have my diagnosis: stage 4 diffuse adenomyosis plus a side of endo (not sure what stage since MRI can’t really determine that.) What now? I honestly was fully prepared for the endo diagnosis but the adeno came as a bit of a surprise and my doctor said it’s quite severe.

I’m currently on continuous birth control to stop periods (Nikki, aka Yaz) to stop periods but am still having vasovagal presyncope episodes pretty regularly (complete with blood pressure drop, chills, cold sweats, dizziness, vomiting and pooping on the floor, and being unable to walk or speak full sentences). Beyond the episodes, my daily pain is between 1-3 and is mostly discomfort that I can tolerate. Pain after orgasm is a 5-7 so I just try to avoid those these days.

My question is, does anyone with stage 4 have an advice? Is hysterectomy my only option at this point? Is stage 4 too severe to bother exploring any other options?

Please help 🙂🙏

Should we all be refusing the umbilical entry?

I’ve reviewed clinical data (including JMIG and Obstetrics & Gynecology). If anything here is outdated, I’m open to correction, but it will not change my decision to refuse umbilical entry.

I’m not trying to say with my found information that umbilical entry is always wrong. It’s not, think about the women suffering from umbilical endometriosis! (But umbilical entry can also cause this) But in this case, it appears to be (due to all information I tried to summarise here): it’s an unnecessary risk, and patients are often ill informed due to it being basic protocol.

so let’s inform ourselves!

This is how I understand it:

Complication and failure rates

Studies (2025) report complication rates of 5.8% for umbilical entry vs 1.8% for Palmer’s Point

The majority of serious laparoscopic complications occur during umbilical entry

Umbilical access has a failure rate of 2.5–5%, while Palmer’s Point is reported as near 0% in patients without upper abdominal pathology

Anatomical risk (relevant in my case)

I have a low BMI (178 cm / 60 kg), meaning:

small bowel is often directly under the umbilicus

distance to major vessels is minimal

Palmer’s Point provides a greater safety margin, with bowel injury risk reported at <0.05%

Adhesions risk

Up to 15% of patients without prior surgery have adhesions behind the umbilicus

At Palmer’s Point this risk is <1%

Statistically, Palmer’s Point is the least likely entry site to encounter unseen adhesions

Infection, pain and healing

Umbilical ports show infection rates up to 8–10%, compared to <1% at other sites

The umbilicus is a skin fold, higher bacterial load, moisture, and friction (gross!)

Palmer’s Point is associated with:

lower infection rates

lower post-operative pain (lower nerve density)

Scar outcomes and structural changes

The claim that umbilical scars are “invisible” is contradicted by data:

25–30% of patients report visible changes (pigment changes, asymmetry, inversion)

The umbilicus is already scar tissue:

reduced blood supply

less predictable healing

Mechanical stretching and the often occurring ‘inversion’ (pulling the belly button inside out) during surgery can damage elastin fibers, leading to permanent deformation. (Women are often times not told this)

Nerve-related complications

The umbilicus is a nerve-dense region (T10–T11)

Up to 11% of patients report chronic abdominal wall pain after umbilical entry (nerve entrapment / neuropathy)

Total port-site morbidity (15–20%)

When combining “minor” complications:

Infection: up to 8–10%

Scar complications: 5–7%

Hernia / chronic pain: 3–5%

This results in approximately 1 in 5 patients (20%) not having an uncomplicated recovery at the umbilical site.

This contrasts with the near-zero complication rate reported for primary entry at Palmer’s Point.

Surgical access and visualization

Palmer’s Point provides better access to the entire abdominal cavity, including upper abdominal structures (e.g. diaphragm, liver)

Umbilical entry can limit access and may require additional ports

Core reasoning

The umbilicus is:

a pre-existing scar

more infection-prone

more nerve-dense

more likely to contain adhesions

Palmer’s Point:

uses healthy tissue

has a lower complication profile

provides a larger safety margin

Final position

I am explicitly refusing umbilical entry because:

it introduces avoidable risk

it carries a real risk of structural and sensory changes

and there is a clinically supported alternative (Palmer’s Point) with a better safety profile

This is not about preference or aesthetics. This is about risk reduction and long-term outcomes.

(UPDATE: I forgot to mention that there is a medical contradiction! Doctors are always quite hesitant to cut into scar tissue. (It has low blood flow, it’s not stretchy etc!) so their choice to choose the navel/bellybutton is strange. I haven’t been able to find a proper answer to this as well. The only thing that seems obvious to me: the umbilical port is easier for the doctor. It’s not standard for our well being.)

At the same time, body image and physical changes do matter. Even something that may be considered “minor” from a surgical perspective can have a real impact on how someone feels in their body. Your feelings are VALID.

There are women who struggle with this afterwards but don’t speak up, sometimes because they feel like they “should be grateful” that the surgery was technically successful. That doesn’t mean their experience isn’t real.

There is also some discussion in literature about how these changes can have a stronger psychological impact on people with sensory sensitivities (such as autistic or ADHD individuals), especially when the body’s structure feels or looks different afterwards.

Anyway, that’s my little autistic rant😭✋🏻 This is a SUMMARY I have name this clear. This is not ALL the information out there, there is MORE.

others sites I visited fort research, this isn’t all but I forgot to write everything down…(oops)

[1] https://www.intechopen.com

[2] https://www.researchgate.net

[3] https://nl.surgaid-med.com

[4] https://nl.weidemedical-es.com

[5] https://www.ncbi.nlm.nih.gov

[6] https://pmc.ncbi.nlm.nih.gov

I’m positive I have endometriosis despite not having a diagnosis yet. My MRI didn’t show anything because I have metal hardware in my back that interfered. I’ve been blown off by two doctors, and am seeing two more this summer with the hope that at least one will listen to me.

But I have muscular dystrophy and am afraid to have surgery again (I’ve had multiple for other reasons). Primarily because the anesthesia can affect my diaphragm.

I’m pretty sure I have bowel involvement and possibly bladder involvement, and think my diaphragm and lungs have been impacted. A recent CT scan showed a diaphragm abnormality and a partially collapsed lower right lung (both of which are new and were not present a couple years ago).

So…what are the risks of not getting surgery? Would it be better to risk it and have stuff removed rather than not getting it and possibly risking my organs? What’s the likelihood that not getting excision surgery could cause severe organ damage?