Part three of my twenty-five year battle with endometriosis.
I went to a walk-in clinic to get a pap done for the bleeding that was happening during and after sexual intercourse. While waiting for the results during the week I was on the floor doubled over in the most intense pain I have ever felt in my entire life. I went to my general practitioner; I was white, slight fever and delirious. I was in so much pain. I told her I had a pap done, but the results were not back yet. I was told to call the walk-in for the results but they weren’t back in so they had to call the lab. In the end, I was told I had Pelvic Inflammatory Disease (PID).
None of it really sunk in right away because I was in so much pain I thought I was going to die. I was given an antibiotic but I was in so much pain I threw up the medication in the parking lot, picked it back up and put it back again. I was delirious, I couldn’t think straight and I really have no idea how I got home that day. All I knew was I was in pain. I got a phone call from the pharmacy three days later telling me that they had given me the wrong dosage and it should have been 3x what I was given; that explained why the pain never went away. The disease was pretty much wreaking havoc on all of my insides, everything that was fixed with my endometriosis surgery. I was devastated.
Years later, I realized that my doctor made the wrong choice in medicating me as she should have sent me straight to the hospital to put me on an IV drip because there were abscesses that burst and were now covering all of my insides. From the day of diagnoses of the PID, the pains never really left. I started to have problems having bowel movements, which I hadn’t had since before the surgery. I just couldn’t go and I felt that my bowel was twisted somehow so I went back to my surgeon. He looked at me like I was making up my pain and that there is no way I should have pain and should go home. I was so angry.
About 6 months later, I ended up in the ER for excruciating pain on my left side near my ovaries. At this time I swore it had to be my bowels but it wasn’t My tube was enlarged and there was blood inside and all around it. They had no answers for me, just sent me home. I researched it. Either it would be tubular cancer, PID remnants or endometriosis in the tube. I knew it wasn’t cancer; it has to be either the PID, that was not treated properly almost 3 yrs later, or endometriosis.
During this time my pap came back with mild dysplasia twice so I was sent to my gynecologist to have a colposcopy. The test showed high grade lesions with no HPV. The pains persisted during sexual intercourse and so did the bleeding.
At the beginning of 2012, I went back to my surgeon again as pain during sex as well as bowel movements and urinary pain and he said there was fluid in the cul-de-sac and if it was endometriosis, a prescription of Lupron would resolve the issues. I went back three months later. I was too afraid to have sex during that time, but it made no difference, the doctor it isn’t endometriosis. “You have Neuropathic Pain Syndrome,” I was told. At that point I could have put my hands around his throat and strangled him. This surgeon had the worst bedside manner ever. He knew I was going to the Wasser Pain Management Clinic in Toronto and said that if the gynecologist there (he had trained her) agreed to the surgery he would do it. However, I already decided that I was never going back to him because every time I left his office, I cried for hours.
In July 2012, my gynecologist at Wasser agreed to do another surgery since I had only had one. She put me on various medications such as Gabapentin, Amitriptyline and Visanne. During this time I was calling her office to actually book the surgery and I didn’t get a hold of her for months later. Finally, on November 6th 2012, I made an appointment to book my surgery for this year or the beginning of next year.
To bring you up to date my husband and I got married in August 2012 at city hall and are going to Dominican for a symbolic ceremony. My dream is to be able to finally have sex with no pain with someone I truly want to spend the rest of my life with.
Until my surgery I continue to take the Marvelon and do weekly if not twice a week enemas as I can no longer have a bowel movement. I hope that whatever damage was done, any endometriosis that is there and any scar tissue that is obstructing my bowels, will be removed so I can carry on with the next chapter of my life.
Have you every been treated for PID with antibiotics? I had to be on a heavy dose for a week when I had it. My fear is always that I could get it again. I know for me it made my insides worse after having it. A lot worse.
I hope you get the help you need 🙂
Hi angel I’m so glad that I’m not the only one with this disease. I also have endometriosis and was once diagnosed with PID. I’m in pains right now I don’t know what to do
My husband doesn’t quite understand me but I have given him plenty of articles to read so he somewhat understands. Our relationship is not good at the moment and to be honest sometimes I wish I was living alone with this disease because it effects everyone involved.
If you had PID you would know. You would be on your hands and knees begging for someone to help you. It is probably the worst pain I have ever felt in my entire life. It is possible that you have adhesions or like I had carbon residue somewhere acting as a splinter causing the pain that the symptoms that you are in.
I hope you get some answers soon 🙂
I was trying to research PID as I just found out about it from going to the er just a few weeks ago. I am always in so much pain it’s unbearable!! I have two kids and have had tubes tied. .. but like Jae I to do not have health insurance.. I just dont know what to do!!! If u have any advice please let me know thanks!
I am glad you found it. The more people talk about stuff the easier it is to find answers. Have you had PID before? If you have it possible it has caused a lot of damage. Let me know how it goes and thanks so much
I stumbled upon this site looking at pain to the left of the navel. I cannot believe my eyes because you and I have the same symptoms!! I have endometriosis, and I too suffer from the same constipation. I also have a lot of abdominal pain, painful, urniation, and dyspauernia. I have been to doctor after doctor with no relief. I got the same crap about it being in my head or “neuropathic”. I feel sick to stomach contanstly. This is not in my head, I understand your pain.
I am without health insurance at this time so I am going to a free clinic. I am going to ask about PID.
It is so inspiring to hear you found a wonderful man who understands all your issues. I am married for many years and he hasn’t been the most understanding person in the world. I always feel like who would want me anyways with all these issues…but maybe I am wrong.
I wish you the best with your health. I hope to get mine taken care of very soon. I will never give up hope 🙂