“You Don’t Have Endometriosis” My Story

Many people have been asking about the return of our podcast iCarebetter: Endometriosis Unplugged. We are on a hiatus but thought it may be nice to share some success stories as those were quite popular. As we get the podcast up and running again and more interviews underway, I thought it might be helpful to share my own story, and why I am such an excision surgery advocate, though I understand it does not address everything. When you are told “you don’t have endo” you have two choices – give up and look elsewhere or keep pushing. 

Many of us keep pushing and get pushback about having central sensitization, needing mental health help, or it’s just not the right diet and supplements. Yes, all of those things may be true AND it also may be true that you didn’t have the correct surgery or surgeon. 

Endometriosis Symptoms 

I was twenty-eight years old when I suddenly started feeling a sharp pain in my lower abdomen, one that was all too familiar in my teen years. I was told by the emergency room doctor shortly after starting my period that the pain I was having was likely due to rupturing cysts, and told my mom I needed to see a gynecologist to talk about birth control options to prevent them from happening. I was thirteen years old at the time, in the emergency room after my mom and brother had to pull me out of the shower because I experienced sudden and severe abdominal pain causing me to not be able to stand up or walk. 

This was 15 years later but all too familiar. I saw my doctor who recommended an ultrasound and was told once again “it was probably a ruptured cyst,” and that I may want to consider birth control pills in addition to my Mirena IUD as it “could be defective,” despite no periods or pregnancy scares over the last two and a half years since I had it replaced. At the same time, I became severely constipated and bloated with anything I ate, as well as feelings of sharp rectal pains and an odd sensation throughout my body, like a tingling or wave of lightheadedness during times I did have an urge to have a bowel movement. This also was very familiar to me but I hadn’t had it in years, it was less like a pain but a very intense uneasiness that made me stop in my tracks and literally pray to God for it to end, which it did, usually within a minute or two. 

After the ultrasound, the addition of Lo Loestrin along with the Mirena IUD, next step was a colonoscopy with no answers except for some relief after three months of barely any movement, and a diagnosis of IBS (irritable bowel syndrome). At this point, I had seen my OBGYN, a GI specialist, a naturopath, and discussed with my PT colleagues, but still no answers. 

I should mention, this all started after the most severe stress I had ever experienced at this point – a divorce. So it was no surprise that throughout all of these visits, it was definitely suggested that this could all be due to stress and anxiety. I knew there was more though, and I was seeking out the help I needed to learn to handle the stressors.  

Trials and Tribulations 

After about two years of trying various diets, food allergy & sensitivity testing, changes in birth control pills, a new GI doctor finally asked if I’d ever been tested for SIBO (small intestinal bacterial overgrowth).  “SIBO? What’s that?” I responded. Sure enough SIBO was in fact part of the problem (both hydrogen and methane positive) and after two rounds of antibiotics, things started to feel somewhat normal, until the UTI-like symptoms began. However, it was not a UTI, I learned that I was experiencing side effects from the birth control pill I had started to control the pain from the cyst ruptures, also known as hormonally mediated vestibulodynia, which we recently wrote about in a previous blog which you can read here. 

At this point, constipation was still a struggle, but nothing like it was before, the antibiotics helped, the diets helped, everything helped a bit, until it didn’t. The rectal symptoms were recurring, the constipation still a daily struggle and if I had a “bad” diet day, it took almost a week to get back on track. SIBO was recurring, the diets were stressful, the symptoms would fluctuate without a rhyme or reason and then the severe abdominal pain came once again along with a fever and nausea. It was time to go back to the ER. 

The ER Visit

This felt all too familiar, I waited several hours and even overheard the team in triage say “bladder symptoms, probably UTI.” I was finally rolled in and waiting for a CT scan to check for appendicitis. The pain was severe and the only thing that made a dent, and in my fever, was the lovely little morphine button. As soon as it got close to the time to press the button again, fever would spike and pain would come back. 

Good news and bad news. Good news no appendicitis, bad news is in the scan they saw a cyst on my liver and I need more imaging. More imaging was done and they couldn’t say what the cyst was, but this time they saw that I had some swelling in my lung and there was something called ‘atelectasis’ or a partial deflation of my lung. They finally sent me for a pelvic ultrasound and guess what the conclusion was “you probably ruptured a cyst, we see fluid behind your uterus. Have you seen your gynecologist?” 

At this point the fever wasn’t breaking, I had no answers but 10 more problems on the list and they admitted me to hospital where I stayed for four days. 

The Hospital Stay

I was checked by probably every type of specialist within those four days. Hospitalist, GI doc, urologist, immunologist, obgyn, and even infections disease. I had breakouts in hives and rashes because I am very sensitive to most antibiotics, I was in and out of imaging machines, my oxygen levels wouldn’t stay up – likely because of the partial lung collapse, and I had to practice breathing into that plastic thingy (an inspirometer), and on top of it, they diagnosed me with a heart murmur and was told I needed to follow up with a cardiologist for a further workup. 

In the end, they released me because the fever finally broke and my pain subsided and told me “we have no idea, it was probably some virus, follow up with your OBGYN.” 

The OBGYN (Urogynecologist)

It was after a patient of mine, who had endometriosis, asked me “Do you think you could have endo?” I really never thought about it, my younger sister had endo or was clinically diagnosed with it many many years prior, but I didn’t feel like she did, she had severe period pain, would miss work and school, heavy bleeding, all the endo symptoms and I had GI issues and intermittent severe abdominal pain from rupturing cysts. 

At my appointment, I brought up this question – “how do they KNOW I ruptured a cyst, if it ruptured? She told me that because of the fluid and the symptoms, it was likely that, and that we should see the fluid go away shortly as the body reabsorbs it. I still had my IUD so I wasn’t sure when I was ovulating and she agreed to do weekly transvaginal ultrasounds to monitor. The fluid never went away. 

I had a lovely doctor, and she really helped me get on the right path, though she was not an endometriosis specialist, she was able to take me to surgery. I knew what she could and couldn’t do, and she was very transparent with me about this. By this time, I had done more research and knew there was a very high likelihood I would have to have another surgery – an excision surgery. I was okay with that because I knew what I was going into and knew what the outcomes could be, and it was essentially free, because of that lovely ER visit hitting all of my deductibles and out of pocket maximums. 

Surgery #1 (November 2017)

To keep it short, I was told I didn’t have endo. Despite this, she said that my left uterosacral ligament was ‘very strange’ and she took a biopsy and a sample of the pelvic fluid that never went away. When I got my pathology report back it read:

• Left Uterosacral Ligament: Fibrotic inflammatory tissue
• Pelvic Free Fluid: Cells consistent with endometriosis

I was still not given an endometriosis diagnosis after this, and I felt horrible. This was November 2017 and all the tools I had been able to use to manage to some degree, didn’t work. I was so fatigued, my GI symptoms were awful, SIBO came back yet again, and just felt unwell. Everything was difficult but at least I was on the right track. 

Surgery #2 (March 2018)

After having my surgical pictures reviewed by trusted colleagues, and the most painful, but helpful pelvic exam that literally reproduced my symptoms. My doctor told me “this is endometriosis, I can feel nodules.” She assured me that it presents in different ways, and really taught me the difference between the training of endometriosis specialists vs the standard gynecologist. She educated me about the different types of lesions and that not all of them come back as endometriosis because they lack “stroma and glands” but that fibrotic endo is likely what I had, and it can cause problems. This made a lot of sense and in March 2018, I had my second surgery, but this time it was the right one. My pathology report looked quite a bit different this round, and I felt entirely different. 

• Uterus: globular and soft (possibly adenomyosis)
• Rectovaginal septum: Peritonealized fibrofatty with focal reactive mesothelial hyperplasia
• Right Uterosacral Ligament: Peritonealized fibromuscular and fatty tissue
• Left Uterosacral Ligament: Fibromuscular and fatty tissue with few CD10 positive cells compatible with endometriosis
• L peritoneum (pelvic sidewall): Fibrofatty tissue with endometriosis with single non-necrotizing granuloma

It was definitely validating seeing this report but it was even better when it just was gone, the inflammation, the pain, much of what I was experiencing was just gone. I now understood what many of my patients had told me. While this is not everyone’s experience, in my personal and professional experience, when you’ve addressed all the various factors, oftentimes the lesions are the last one and there is a vast difference in those who have a true excision surgery versus an incomplete excision surgery or non-excision surgery. Dr. Vasilev just wrote about how to find a specialist and some considerations. 

If you suspect endo is your problem, and you’ve had a surgery though you suspect it may not have been a thorough one, I sincerely urge you to seek a second opinion. I see this all too often, and it saddens me. I understand, because I have been there. The instances I see this the most are the ones who have fibrotic endo and are either told “you don’t have endo” or it’s never even addressed during their surgery because it is not recognized as endo by many doctors.  

The years following…

I did well for about three years, and after a very significant reaction I had, and months of inflammation following, I felt those endo symptoms creep back. The constipation that just felt like something was blocking my intestines from moving and the rectal symptoms, which is called dyschezia, and is one of the clinical manifestations of endometriosis. I had some symptoms that concerned me about thoracic endo, and the other new symptom was that I was getting fevers and flu-like symptoms about 1-2 days before my period that would dissipate on day 3 of my cycle. Because of COVID, and working in healthcare, I was testing frequently, but it was never covid and it would never be more than 48-36 hours. 

I found a wonderful in-network doctor in San Diego, and in February 2022, I had my third surgery (second excision) and there was regrowth of only fibrotic tissue in the rectovaginal septum as well as adhesions attaching my sigmoid colon to the left pelvic side wall. Once again, my symptoms completely resolved following the surgery. 

My story is not a unique one, but I felt it was important to share as I have had this same discussion with others in urging them for a second opinion and sure enough, they DID have endo, they just weren’t listened to, or hadn’t found the right doctor. I get discouraged when I hear people dismiss excision surgery because of the lack of good studies supporting it. The surgery is not the issue, the research is the issue. However, surgery won’t fix or cure all of the issues one may have and while the surgery (I feel) is crucial to most, if not all, people; you still need to be a detective and address ALL of the issues and root problems for the best outcome. 

Check out our podcast iCarebetter: Endometriosis Unplugged, available on Spotify and Apple Podcasts for more personal stories and discussions with experts, and we will see you for more episodes in 2024! 

Related reading:

1. Endometriosis and Painful Intercourse: Is it Really Just Endometriosis?
2. Finding an Excision Specialist: What you Need to Know
3. All You Need to Know About Endometriosis Lesions

1 year ago Endometriosis , Endometriosis Education , Endometriosis Specialist , Sexual Health No comment

Understanding Neuroproliferative Vestibulodynia and the Connection with Endometriosis

Table of contents

• A Quick Overview
  • Vestibulodynia
  • Endometriosis
• The Concept of Neuroproliferative Dyspareunia
  • Neuroproliferation in Vestibulodynia
  • Neuroproliferation in Endometriosis
• Symptoms of Neuroproliferative Vestibulodynia and Endometriosis
  • Vestibulodynia Symptoms
  • Endometriosis Symptoms
• Causes of Neuroproliferative Vestibulodynia and Endometriosis
  • Causes of Vestibulodynia
  • Causes of Endometriosis

A few weeks ago, we delved into the intricacies of vestibulodynia and its potential association with painful intercourse in individuals with endometriosis. We presented an overview of vestibulodynia subtypes in general and discussed one of the more common presentations we see in those with endometriosis – hormonally mediated vestibulodynia which in many is caused from the side effects of the birth control pill, which are offered as first line “treatments” for endometriosis. Today, we will focus on another subtype, neuroproliferative vestibulodynia (NPV), and the fascinating connections are are seeing in these two conditions, including the role of mast cells.  

If you missed our previous discussion on painful sex and vestibulodynia, you can find the detailed information here. 

Recent research endeavors have yielded valuable insights into the fundamental causes of these conditions, unveiling a shared mechanism involving neuroproliferation, characterized by an increase in nerve cells. Furthermore, an elevated presence of mast cells—integral components in immune function—has been observed both in endometriosis tissue and the vestibule of individuals diagnosed with neuroproliferative vestibulodynia (NPV).

Individuals diagnosed with NPV undergo a surgical procedure which is excised to remove the problematic tissue, sound familiar? 

This surgical approach has demonstrated notable success in alleviating pain for individuals affected by NPV. Dr. Paul Yong, an OBGYN, endometriosis surgeon, and researcher based in Canada, addressed the parallels between these two conditions during his presentation titled ‘Neuroproliferative Dyspareunia’ at the ISSWSH’s annual conference in March 2022. Dr. Yong’s insights laid the foundation for subsequent research, with Dr. Irwin Goldstein initiated further exploration earlier this year.  We were lucky enough to be able to speak directly with these two on our podcast iCarebetter: Endometriosis Unplugged, available on Spotify (linked here) and Apple Podcasts.

A Quick Overview

Vestibulodynia

Vestibulodynia is a condition characterized by pain in the vestibule, the area of tissue within the vulva that surrounds the opening of the vagina. This pain can be described as sharp, stinging, burning, or hypersensitive, and can occur spontaneously or be provoked by touch or pressure, and many people will report superficial dyspareunia (or pain upon insertion) which is not limited to penis in vagina sex. Vestibulodynia is a subcategory of a broader condition called vulvodynia, which refers to chronic pain in the vulva.

Endometriosis

On the other hand, endometriosis is a condition where tissue similar to the lining of the uterus grows outside the uterus, often causing pain and fertility issues. This condition can cause deep dyspareunia, or pain with deep vaginal penetration. Like vestibulodynia, the pain associated with endometriosis can be chronic and can significantly impact the quality of life.

The Concept of Neuroproliferative Dyspareunia

Both vestibulodynia and endometriosis can lead to pain during sexual intercourse and the term neuroproliferative dyspareunia, is in reference to the source of the pain.  Both tissues have been shown to have neuroproliferation, or increased growth, of nerve endings in the areas affected by these conditions and we are now seeing an aberrant amount of mast cells as well also contributing to inflammation. This overgrowth of nerves, and presence of excessive mast cells, can lead to heightened sensitivity and pain during vaginal penetration, both superficially, as well as deep.

Neuroproliferation in Vestibulodynia

In the case of vestibulodynia, research has shown that there are too many nerve endings in the vestibule tissue. This overgrowth of nerves, or neuroproliferation, is still under investigation. However, it is believed that this could be due to a congenital birth defect, with the excess nerve endings developing very early. There are two types of neuroproliferative vestibulodynia: primary (congenital) and secondary (acquired). In primary vestibulodynia, individuals have experienced pain their entire lives though usually identified shortly after menses or with first attempts at penetration (sex, tampons, speculum exams) while in secondary or acquired vestibulodynia, pain develops later in life usually after an event such as an allergic reaction, chronic yeast infections or other infection, and there has typically been a period of normalcy prior to these event. 

Neuroproliferation in Endometriosis

In endometriosis, nerve fibers have been found around endometriosis lesions in the pelvic peritoneum. These nerve fibers are more numerous in individuals with endometriosis compared to those without the condition. The increase in nerve fibers is believed to be driven by the immune response to infection or allergy, leading to nerve proliferation.

Symptoms of Neuroproliferative Vestibulodynia and Endometriosis

Vestibulodynia Symptoms

People with vestibulodynia typically experience pain at the entrance of the vagina, called the vestibule. This pain can be described in various ways, including as sharp, stinging, burning, or hypersensitive. This pain can also be classified by when it occurs, with provoked vestibulodynia referring to pain that occurs with touch or pressure, while unprovoked pain occurs spontaneously.

Endometriosis Symptoms

In endometriosis, the pain is typically experienced deeper within the pelvis, often during or after sexual intercourse. This deep dyspareunia can also be accompanied by other symptoms, such as painful periods (dysmenorrhea), painful bowel movements, and chronic pelvic pain to name a few. 

For more signs and symptoms, check out our blog Endometriosis Signs and Symptoms: Everything You Need to Know.

Causes of Neuroproliferative Vestibulodynia and Endometriosis

Causes of Vestibulodynia

The exact causes of vestibulodynia are still being investigated. However, research suggests that the overgrowth of nerves in the vestibule tissue could be triggered by signaling from immune cells in the tissue. This could be due to a congenital birth defect, resulting in excess nerve endings developing very early, or it could be an acquired condition, developing later in life possibly due to infection or allergy.

Causes of Endometriosis

The causes of endometriosis are also not fully understood though we have began to shift away from the narrative that it is caused by retrograde menstruation, and towards a genetic basis. We hope that in the future with new research, we will be able to fully understand the cause (or causes) and have optimal treatment methods to address the heterogeneity of this disease. 

You can read more about these theories in our blogs listed below:

1. The History of Endometriosis: Unraveling the Theories and Advances [or lack thereof]
2. Is Endometriosis Genetic? Understanding the Genetic Links in Endometriosis.

There has been limited research in the role of mast cells in endometriosis thus far, and Dr. Irwin Goldstein, MD has now successfully demonstrated in a case study of a patient with NPV, her endometriosis pathology also demonstrated similar findings, as well as a biopsy taken of her colon during a colonoscopy. 

Thank you to Paul Yong, MD for this information, here is a comparison of endometriosis and NPV and common mechanisms in each.

	Endometriosis	NPV
Prevalence	Approx 10%	Approx 10%
Diagnosis	Histological diagnosis(ectopic endometrial-like epithelium/stroma)	Clinical diagnosis (but normal vestibular histology consists of epithelium/stroma) NPV – mast cells and excessive nerve endings
Description of Dyspareunia	Deep	Superficial
Nerve Density	Increased local nerve density compared to controls	Increased local nerve density compared to controls
Neutrophins	Increased NGF expression by endometriosis stroma when higher nerve fibers	Increased NGF expression by immune cells in vestibulodynia in areas with more nerve fibers
Inflammation	Increased IL-1b expression by endometriosis when higher nerve fibres Endometriosis stromal cells, when stimulated by IL-1b, increase production of NGF and promote nerve fibre development in a PC12 2q13 polymorphism (adjacent to IL-1 family genes) Mast cells Tryptase	Increased IL-1b in tissues in vestibulodynia vs. controls; Not observed in another study (Eva) Vestibular fibroblasts from patients with vestibulodynia expressed more IL-1b compared to external vulvar fibroblasts and to controlsIL-1b and IL-1R antagonist gene polymorphism Mast cells Tryptase Heparanase

References

1. Mwaura, A. N., Marshall, N., Anglesio, M. S., & Yong, P. J. (2023). Neuroproliferative dyspareunia in endometriosis and vestibulodynia. Sex Med Rev. https://doi.org/10.1093/sxmrev/qead033 
2. Goldstein, S., Yee, A., & Goldstein, I. (2022). Severe Allergic, Inflammatory and Traumatic Reactions of the Vestibule Associated with Acquired Neuroproliferative Vestibulodynia. The Journal of Sexual Medicine, 19(8, Supplement 3), S3. https://doi.org/https://doi.org/10.1016/j.jsxm.2022.05.012

Bornstein, J., Goldstein, A. T., Stockdale, C. K., Bergeron, S., Pukall, C., Zolnoun, D., Coady, D., consensus vulvar pain terminology committee of the International Society for the Study of Vulvovaginal, D., International Society for the Study of Women’s Sexual, H., & International Pelvic Pain, S. (2016). 2015 ISSVD, ISSWSH, and IPPS Consensus Terminology and Classification of Persistent Vulvar Pain and Vulvodynia. J Sex Med, 13(4), 607-612. https://doi.org/10.1016/j.jsxm.2016.02.167