My story of misdiagnosed tubo-ovarian abscess

My story starts.. well, a long long time ago. It took me 10 years to find a good therapist. For this part of my life’s story, the story of my TOA, it’s enough to know that as a child, I was not allowed to have boundaries; anger was a destructive emotion that my father monopolized and that I learned to repress; and when someone else disagrees, you either fold your cards or you will be hurt intensely.

One of many conclusions I made was that I will not have children. This started as a childhood belief that “If I have children, they will hate me like I hate my parents”. In early adulthood it changed to concerns about climate change and the future of the planet. In my twenties I felt I could not impose life on someone else. Around 30, I told my therapist that I knew what it was like to grow up with a parent with issues and would never do that to a child. I feared I would never make a good-enough mother. She empathized and said: “That’s also a form of love for a child.” Now, at 35, I add that I am selfish: my life has to be about me. I am focused on healing and nothing else. Unfortunately my sterilization is now also a trauma I have to heal from…

When I met with a gynecologist, I asked about the cut-and-burn method of sterilization. Her answer? A laughing “Ohh, no, we don’t do that anymore”. She pushed Filshie clips. I was hesitant and unable to push for the procedure that I wanted. The doctor offers this? Take it or leave it. I tried to do research on the Filshie clips, but nothing came up except that they were safe and reliable. I wonder now what search terms I used. Did I search for “are Filshie clips safe?”. Because what I know from Google is that if you search for this, Google returns only those pages that say “Yes, they’re safe”. If you Google for “Filshie clips abscess formation”, you’ll get entirely different results. But of course I didn’t know that, because I didn’t know what search terms to enter to pull up these research papers. Google is one big confirmation bias.

As I was waiting in my hospital gown to be picked up to be wheeled to the OR, I felt an intense fear arise. In hindsight, it was a signal I should not have ignored. I felt an intense sense of being in absolute fucking mortal peril. A part of me screamed on the inside: Get me out of here! I wanted to leave, but was afraid what other people might think of me. (Baddd motivator for your decisions!) I told myself I had made this choice and that if I wanted the end result (sterilization) then I should have the procedure done. My boyfriend remembers how distraught I was. Later, I read stories about people having premonitions like these. All I can say is, don’t ignore them. If anything inside you is telling you you are not safe, remove yourself from the situation.

I was sterilized with Filshie clips in 2015.

In 2016, I found “my” therapist. She recognized I have complex PTSD from emotional neglect and abuse. She was able to see the extent of the damage I sustained, for the first time in 30 years. A lot of memories resurfaced. I also started having anxiety attacks. I related those anxiety attacks to my trauma resurfacing. Even though I had had fear before, I had never had anxiety attacks. And I have now come to appreciate that a physical anxiety attack because you are physically sick feels very different from a PTSD flashback or trigger. They are distinctly different things.

So, I had my sterilization in October 2015. In 2016 I found my therapist. I had (and still have) trouble with my C-PTSD triggers, which is basically any social interaction involving people being annoyed or angry, disagreements, confusion or misunderstandings, power dynamics or any kind of hierarchical relationship.. On top of that, I started having anxiety attacks. Random bursts of terror. And my sugar levels totally got fucked over and crashed constantly. Before, I would wake up in the morning, grab a bowl of cereal and start checking my e-mail. It was my morning ritual. Now, I couldn’t function if I hadn’t eaten. I was so fucking hungry I couldn’t think. I started eating a near constant flow of sugary snacks so as not to crash every couple of hours. The brain being a story telling machine, came up with the mother of all mindfucks: “I cannot cope.” After my boss said “I don’t think you’re really managing these anxiety attacks”, I quit my job.

My medical file is an absolute mess. I got a referral to a psychiatrist, asking for trauma evaluation. Me and my therapist hoped that a PTSD diagnosis would come out. Instead, an anxiety disorder was established and written down in my medical file.

My boyfriend and I started our own company. For a brief while, everything went a lot better. But it didn’t last.. In January 2018 I started having serious bowel troubles: such severe constipation that I still have an external hemorrhoid to this day. I also had severe fatigue: I couldn’t get out of bed. Before, I would practically jump out of bed and start talking. My boyfriend was the one who needed a couple of minutes to catch up with me šŸ˜‰ But now, I was just so fucking tired, I had to sit down in a chair to rest, right after I had gotten out of bed. Before my sterilization, we would sometimes lay down to have a nap on Saturday afternoon. It would be a refresher. But now, after such naps, I felt worse than before I laid down. And I started getting ocular migraines..

I went to my GP again, who ordered an anemia test. Nothing. In that period, I started having left abdominal discomfort. And my period was getting lighter. I think my right hemisphere already knew what was going on, and my left hemisphere wasn’t able to listen. I asked for a hormone panel and said I thought something was wrong with my sterilization. Did I mention I still had anxiety attacks? My GP tested my hormone levels, found nothing wrong with them and dismissed me. They started writing down that I had anxiety. Basically, that I was all making this up. I hate my medical file now. That ball of paper is one long list of misdiagnoses.

When I showered, I had always rinsed with cold water afterwards, for better blood circulation and to help against cellulite on my legs. In 2018, I ended that ritual by pointing the shower head at my lower left abdomen. In hindsight, it’s all so easy to say “I should have listened to my body”.

I also got ocular migraines and other vague complaints. After a lot of visits to the GP, and my talking about anxiety and childhood trauma and having always been somewhat of a hypochondriac (yes, this story is a hypochondriac’s nightmare, going to the GP a lot increases your chances of a misdiagnosis), my GP started treating me as such: anxiety disorder and hypochondria. They wrote it down in my file again and again. Things were about to get a lot worse. At some point I got angry at them and told them to stop making this all about anxiety. I was sick! I had lost weight. But all they saw is that I had changed my diet. So that must have been the reason.

Advice to everyone who has mental health issues and is placed in the anxiety/hypochondriac box: Do not change your diet, not even if your GP agrees!

I hadn’t put two and two together yet. The most debilitating part was the anxiety. We found something of a pattern: it was related to my menstrual cycle. So we wrote in the calendar “red week” as a warning signal that anxiety would come up. My boyfriend tried to help me manage the anxiety. But in hindsight: There was no clear trigger. No event that caused it. And nothing that helped, I was anxious, restless, I couldn’t apply any of the things we agreed to do. What was happening is that my cortisol levels were spiking and going through the roof due to an infection. An abscess was growing around the Filshie clip on my left fallopian tube.

I don’t know if you’re with me so far on the symptoms. At the beginning of 2018 I had anxiety, fatigue, crashing sugar levels, severe constipation, ocular migraines. In the summer of 2018 I changed my diet. I went gluten and dairy free. For a short while the anxiety subsided. Until I found buckwheat and started using it as a gluten replacement. That’s where it all got so jumbled I’m not sure if I can tell it chronologically. I started having shortness of breath. In the mornings, I would wake up sounding like a vacuum cleaner turning on, inhaling loudly. We removed the carpet in our bedroom, thinking maybe my dust mite allergy from my childhood had come back. Things weren’t all bad that summer. We joked that for the first time in years, I didn’t have cold hands and feet. In the mornings, my belly was hot to the touch. We joked about it.

After using buckwheat for two weeks, I got shingles on my back. In hindsight: Shingles is a signal of a weakened immune system.

Also, I started having serious vaginal discharge in the evenings, I was dripping wet. Obviously I made a sex joke out of it. Also, my menstrual cycle was getting shorter and my period got so light it was just a single day of brown discharge instead of 4-5 days of moderate bleeding. More and more often I had abdominal burning/pain/discomfort.

On October 24th 2018, I woke up without appetite and with a sense of dread. Something was seriously wrong! I started seriously questioning my sterilization. Something inside me had been trying to grab my attention. But still, I was not able to stand up for myself, get a referral to a gynecologist and do something about it. I was too afraid to say anything and believed that if the doctor does not hand out the referral themselves, you aren’t allowed to ask for it. I started searching about sterilization clips, nickel (buckwheat contains a lot of nickel) and questioned if I could be allergic. I told my therapist, who said “I don’t go along with that”. This, to my ears, sounded like “Don’t be silly”.

I lost weight. A lot. I visited the GP again. I got a referral to a dietitian, who recommended I eat more……………… This didn’t make my appetite come back, obviously. I discussed with her the anxiety attacks and troubles with my period. She said “Maybe it’s hormonal”. My medical files reads “not acutely ill patient”.

The bowel troubles got worse. Constipation, diarrhea, indigestion. My GP had my stool tested. No outcome. He examined my pelvic area and noted pressure sensitivity.

In November, I sought out a self-employed midwife who could make ultrasounds. She didn’t see anything.

In December, nausea… Abdominal pain. My doctor wrote down “anxiety and anorexia”. And somehow my left brain couldn’t hear my right brain screaming. I remarked to my boyfriend “I regret those clips”. And he said “You’re not getting surgery again, are you? That was awful”. Strike two. Disagreement.

After Christmas, I told my boyfriend “Something is very wrong in my body.” He patted my leg and said “We’ll find it”. He started researching the effect of diet on the mind and gut.

I should have gotten a fucking referral to the gynecologist right then and there. I wish I had listened to my gut because in January of 2019 I woke up and was choking. My body wasn’t breathing. That’s how dyspnea feels. It feels like your body is not making any effort to breathe. I had severe chest pain. I completely panicked. I again went to my GP, who snapped at me. I laid down on the couch in our living room in defeat and thought to myself “let the heart attack come then”.

I couldn’t breathe and visited the ER. I did something that I should never ever do again. Because I expect to be bullied in the ways that I was bullied as a child, I somehow tell the person up front why they should be nasty to me. I told every single healthcare provider that I had anxiety. And they dismissed me. I asked for a referral for sleep apnea. I was grasping at straws, I didn’t see the connection between all my symptoms! I received the referral. Which should have been a sign that I could also ask for a referral to the gynecologist. But I didn’t. That road had been closed down because others had disagreed.

I bought a CPAP machine to force my body to breathe.

I waited too long..

After a few nights I woke up and felt something rupture inside me. I completely panicked, I had severe weight loss and was very sick but everyone was on the anxiety train. Hypochondriac. I tried to tell my boyfriend. It’s an abscess! Help me, it’s an abscess! But in the past year, I had researched everything from celiac disease to bowel cancer. And in the past, my fear of cancer had come up before. In fact, I had also had a breast cancer fear in that year. In schema therapy terms, I was already suffering from the Vulnerability to Harm schema a lot, because my father instilled in me a fear of cancer and as a young child I had had to act as the adult in emergency situations. It was a total mess, with my C-PTSD ruining a clear picture of physical illness.

In January 2019 my boyfriend was on the verge of a burn-out and couldn’t handle it anymore: He erupted in anger and demanded I stop being sick. He went into denial. I emotionally completely collapsed. I never uttered the word abscess to a healthcare provider.

I started buying blood tests out of pocket. A blood test showed mildly elevated white blood cell count. Mildly. The GP shrugged and said that this sometimes happened and it would go down in a week. I had a second test done and it didn’t go down. Bacteria and blood were found in my urine. It was also dismissed. I had a private MRI scan done. It didn’t show the tubes, or the clips, or the abscess. I had hoped it would be visible, so that I could have my boyfriend’s support again. It wasn’t visible. Later, my boyfriend, still in denial, said “I expect you told them you wanted to see your tubes on the MRI.” No, I hadn’t told them. A friend who is a radiologist told me later that the tubes wouldn’t be visible on a ‘generic’ MRI without contrast.. My weight was down to 54 kg / 119 pounds. I was sick. But it was such a boiling frog.

My boyfriend was slowly crashing emotionally as well and refused to support me. His house had come down, too, he was emotionally drained. He demanded I do something about the anxiety and hypochondria and so I asked for a referral to a psychologist. And also a referral to a gynecologist, lying to the GP about how the gynecologist “could reassure me about the clips”. In a rare moment of quiet in the storm, my boyfriend looked at me with fear and worry and said “You’ve lost so much weight.”

I still don’t understand why I was still walking around and my blood showed nothing?! I had an ultrasound at the obgyn office. I desperately tried to get proof so that I could get approval, support and encouragement. I couldn’t do this alone.

They saw a cyst but didn’t tell me. They didn’t write it down in the letter to my GP either. What they should have diagnosed right then and there was a tubo-ovarian abscess. The last chance at a correct diagnosis vanished.

I couldn’t explain it. At the obgyn I indicated fear of infection. Fear. Wrong word. I should have said I feel an abscess and it has ruptured. Instead, I said I wanted to see if there was no infection. They instead offered a HSG test to see if I was still sterilized. I asked if she could then see the clips. She said no. I asked how long it would take to have this test done. It might take more than a week. I declined. I didn’t have time.

I had to get a reason to have the clips removed. (I couldn’t simply ask for it, I am not allowed to ask for anything, other people must offer it. I have no right to ask for anything.) I asked to see where the clips were. I never asked if she had seen an abscess, I didn’t dare, after being dismissed and ridiculed for being a hypochondriac by my GP. In December, someone in a Filshie clip support group had advised me to have the clips removed. Back then, I hesitated. Now, I reached out and said I needed to prove an infection. Someone said something about acupuncture. I shut down further. Nobody was going to support me in the way that I was asking to be supported. The obgyn resident offered an X-ray, but told me that this wouldn’t show if the clips were on the tubes, because the tubes wouldn’t be visible. I hoped against hope that the pus I felt squirting into my abdomen was visible on an X-ray.

On Friday, I got the answer: The clips were visible but they couldn’t tell if they were migrated. No sign of infection, and she told me that was never possible to see on an X-ray and she had told me so on the first consultation. (Don’t remember.) On the phone, I asked whether they did clip removal. The obgyn resident said yes. I finally asked to have them removed. She said I had to make a new appointment. In the other room, my boyfriend was fuming. He couldn’t handle it anymore and he had emotionally completely shut down. Any attempts to tell him I had an abscess, an infection, that I was slowly dying and that I had a chance of 10-30% to not survive this, hit a wall. (Edit: actually, after abscess rupture it’s 80-90% chance of death.. I know, it’s a horror story exactly because it’s so fucking unlikely that I’d still be standing upright with something as serious as this. Unlikely, but not impossible.) Nobody would listen to me anymore. Even the obgyn resident seemed angry and said something about “you could get complications from surgery”, trying to scare me away from having the surgery done. She told me I could always get a new referral to them later. I was adamant. My only chance was to have the clips removed.

Without telling my boyfriend, I got a second appointment with the gynecologist. I remember sitting in the waiting room, alone, feeling nauseous, dizzy, sick and fucking miserable. She planned me for the surgery. What I was afraid of, that I would be denied or ridiculed, didn’t happen. I could have asked this at any time in 2018. I hadn’t. I didn’t ask about an abscess or infection either. It was an 8 week waiting time to be operated by her. I called back a day later if I could be helped sooner: Yes, if I let go of the preference of being helped by her. I did and the waiting time went down to 4 weeks.

I called them again, to ask: Have you really, really, not seen an infection??? They called me back “No, we haven’t seen anything.”

You know what they actually wrote down after that phonecall? “Pelvic inflammatory disease seems unlikely, because of the duration of the complaints.” The duration. In other words: Yes you have all the symptoms, but you’ve been ill for too long. They only knew the acute form of PID/TOA.

My surgery date was set to March 7th 2019. I called the hospital again: Is there a way I can be helped earlier? They answered: You could be put on a list where, if someone cancels, we call you. I agreed.

I don’t know why I wasn’t physically collapsing? I was seriously sick and had felt the abscess rupture. In fact, an abscess will fill up again and again and discharge in your abdomen again and again… did you know you can feel that?

I started having toxic shock symptoms. I was starting to have muscle spasms, developed a rash on my feet and couldn’t keep food down. But, nothing in the blood, so not really sick, right? I tried once more to raise my concerns with my boyfriend. He snapped at me.

One last attempt at proving what was going on: I booked an ultrasound at a private clinic. I remember sitting in the waiting room, feeling so very very tired, sick and feeling the abscess drain, once again, in my abdomen. I prayed that I would be called into the room now so that they could see it happening! It took 10 more minutes and by then the gushing feeling had stopped.

In that private clinic they diagnosed a cyst… Which I had always thought was a hard solid lump. So they hadn’t seen the abscess. But they had. They and I just didn’t realize it. A cyst is a fluid filled sac, just like an abscess. But an abscess is filled with pus… I asked them about infections and they were adamant that if I had an infection, I wouldn’t be walking around.

I then ordered illegal antibiotics.

I won’t recommend this to anyone. But I wasn’t going to make it much longer. I felt it in my bones. I was in mortal peril. I had tried peppermint oil, garlic, anything to help my body fight it. I had no other option but to try to buy antibiotics. It was intercepted by customs twice… My boyfriend called me irrational. Then, I discovered fish antibiotics. Someone on YouTube helped me decide. Her words: “Would I recommend this to anyone? No. Would I take them if I were in mortal peril? Yes”. I ordered fish antibiotics. I didn’t tell anyone anymore.

I tried to get a second MRI done in Germany, with contrast fluid. The lady from that company told me MRI’s without contrast are a total scam, you can’t see anything on them. Fuming, I booked an MRI and canceled the psychologist. My boyfriend erupted in anger and demanded I go to the psychologist. The psychologist called my GP. My GP told my psychologist I had already had an MRI done. My boyfriend threatened to leave me.

I agreed to antidepressants, in a desperate attempt to avoid anyone’s anger. I should have canceled everything then and there, I should have screamed at them that I was seriously fucking sick and that they were endangering my life! But I was also defeated: Their minds were completely closed to the idea that I was actually physically ill.

I had ordered antibiotics. I received them, on the 23rd of February 2019. And, having given up any hope on getting any emotional support through this entire ordeal, on Sunday the 24th, after hesitating for one night, I started taking the antibiotics without telling anyone. It helped me make it to surgery…

The Monday after I started taking these antibiotics, I got a phone-call from the hospital: Someone had canceled. If I was available on the 28th of February, this Thursday. A week earlier.

In the meantime, the psychologist I had started seeing at the demand of my boyfriend, was treating me as an unaccountable child and demanded that I ask my boyfriend for permission for anything I did. I had told my boyfriend one thing: I am on a waiting list. If i can go sooner, I will. I texted my boyfriend. He replied: “The sooner this is over, the better.”

Part of me wishes I hadn’t taken antibiotics. That would have definitely shut everyone up. A friend said “You should have left some of the infection there.” Erm.. right. I couldn’t think anymore, because I was in serious danger. I had started to dehydrate. I drank 3-4 liters of water but it didn’t help. I had dry mouth, parched lungs and headaches… Given the circumstances and my limited capabilities to stick up for myself, I did the best I could. The antibiotics slowly helped relieve some of the sickness. I couldn’t feel the abscess anymore. I got a little bit of appetite back. Having lost 15 kg / 33 lbs in 3 months time and was now on the verge of being seriously underweight (just on the edge case), I could really not afford to lose anymore weight. I tried to each as much as I could, but wouldn’t gain any weight.

The antibiotics stopped some of the toxic shock symptoms and helped my body fight the infection rampaging through my body.

On Wednesday and Thursday morning, the two last mornings of my illness, after I had been on what was frankly an overdose of self-bought antibiotics for 5 days (started on Sunday) I woke up so tired. So very, very tired. I hadn’t been this tired through the whole ordeal. It took me an hour to get off the couch. But on Thursday.. I had made it.

My boyfriend brought me to the hospital and left. I had asked a friend that if my boyfriend couldn’t be there, if he could be there. But by the time of the surgery, I had shut down completely: Everyone so far had proven to be dangerous to my health, either by acts of commission or omission. I wasn’t going to have anyone with me. Nothing would be allowed to endanger me any further.

While preparing me for surgery, the anesthesiologist came to my bed and said “I see a healthy young woman”. I nearly scoffed at him, but I couldn’t. I was emotionally frozen. I went into surgery. After I came out of surgery, I was still foggy from the drugs, the gynecologist came to my bed. I asked: “Have you seen an infection?”. She didn’t look me in the eye. She stared straight ahead and said “Nothing was seen.” I choked and exclaimed “No, that’s not true, I took illegal antibiotics and antidepressants!”. She looked at me in shock. And walked away without saying a word. The follow-up was scheduled to be a phone-call.

My boyfriend and I later talked about the shocked expression on the gynecologist’s face. The file says they removed endometriosis. Part of me is still afraid that “nothing was seen” and they’ll think of me as an imbecile. But it’s not true, they saw enough, I’m sure. They even sent tissue to pathology to have it checked for cancer. My boyfriend afterwards said: “She looked shocked because even with antibiotics, it looked that bad inside you.”

I stopped the antidepressants and threw them out, after having been on them for a week. They had made me more hopeless, alone and had even made me suicidal on the day the antibiotics arrived: I wasn’t going to make it, what’s the point. I was relieved the hospital didn’t have a good IT-connection with my medical file, or they would have known I had taken antidepressants and I might not have had this surgery. Antidepressants are a contraindication for surgery.

Did I mention I am terrified of disagreement, anger, frustration? I am constantly afraid of it. So when I had the follow-up phone-call with the gynecologist, I didn’t dare to say “Did you know I took amoxicillin? Yes, you heard me right after my surgery. I had an abscess and felt it rupture inside me. I had all the symptoms and you misdiagnosed me.”. But I did note that the gynecologist sounded very nervous. When I, instead, asked about when me and my partner could have sex again, she laughed. The laugh of someone whose tension is relieved.

I contacted her once more to ask if the ovarian cyst was seen during surgery. She e-mailed me back “No cyst was seen”. I reported an adverse event listing all the symptoms I had, without mentioning an abscess.

I went to my GP. She also looked shocked. I think at that moment she realized that my symptoms were serious. I didn’t mention that I had felt an abscess rupture. That train had left the station when I started taking antibiotics without a prescription.

I had a tubo-ovarian abscess that was misdiagnosed as an ovarian cyst. The symptoms I had were anxiety, fatigue, ocular migraines, loss of appetite, nausea, anorexia as consequence, dyspnea (shortness of breath) turning into ARDS with heavy chest pain, mildly elevated body temperature, mild abdominal discomfort and upon abscess rupture severe abdominal pain, excessive vaginal discharge in the evenings, shorter menstrual cycles and nearly absent periods, constipation, diarrhea and indigestion, bacteria and elevated blood cells in my urine, and mild leukocytosis (elevated white blood cell count) and eventually toxic shock symptoms including muscle spasms, a rash and dehydration. I have since found research that explains an abscess can grow slowly over a course of many years (up to 10 years after sterilization, in fact, in once case!), can occur without fever, without extreme pain and without ridiculous leukocytosis. I was just outside the normal range. Tip for doctors: That ‘normal range’ is there for a reason. And even inside the normal range, an infection can still be present.

A few weeks later, I had a meetup with two ladies who had had Filshie clips. One lady had had such severe complications, that her case was one of the reasons why my gynecologist didn’t refuse anyone the removal anymore. And the other lady was the lady who had canceled her appointment on the 28th. I found this out while we were having drinks together. I’m not spiritual, but it was very special to me, to find that the two people I was meeting with, had been the reason I could get help despite the misdiagnosis.

Other things have fallen into place since then. I remember in 2017 a sauna visit where I was suddenly extremely tired. I think my body didn’t conjure up a fever because elevated body temperature actually made the infection worse. Maybe my body figured that out and avoided fevers.. And buckwheat is high in potassium. I discovered, before I realized it was an abscess, that potassium rich foods made me more ill. I told my GP but they didn’t connect any dots and gave me a funny look. Research from 1958 and 1987 talks about how bacteria need potassium. And other research shows that your lungs, heart and respiratory system need potassium to function. (That paper talks about a patient being diagnosed with depression and ‘hysterical conversion reaction‘ before they figured out she was actually physically ill.) Yet more research talks about low potassium or hypokalemia in urinary tract infections… Infections eat up the potassium in our bodies, causing cardiac and respiratory issues.

The tension in our household was high in 2019. We didn’t talk. I didn’t talk. After feeling threatened so badly, I couldn’t speak. I could only shake in repressed anger, fear and terror. I suffered from severe flashbacks. I left the house for a month and stayed with a friend. I couldn’t bear being at home. To this day, the house in which I was so sick does not feel like home anymore. I’m feeling a bit better and our relationship is recovering so maybe the feeling will come back. We are in the meantime looking for a different place to live.

In December of 2019, 9 months after the surgery that saved my life, having packed my things to stay with a friend for a while, I collapsed in tears, sobs wracking my body. “Do you still not believe what I felt in my body?”

“Yes, I do. You had an abscess.”

[update: the complaints officer at the hospital has since acknowledged that “it may have a been a good thing you took antibiotics…”. This is as much confirmation as I will probably ever get, the doctor is not reachable for comment and denies anything in writing. They have destroyed the ultrasound and the camera images of the surgery. An attorney informed me that unless it’s confirmed in writing there’s nothing they can do.]

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