News Feed Discussions Frustrated, in pain and can’t seem to get a diagnosis. Please help with some advice.

  • Frustrated, in pain and can’t seem to get a diagnosis. Please help with some advice.

    Posted by deb on October 31, 2018 at 1:26 am

    Hi Members:

    I’m hoping all you wonderful, knowledgeable hernia patients may be able to shed some light on my situation from your own experiences. My name is Deb and I am a 48-year-old female that has been searching for the reason for my right lower quadrant pain for the better part of 16 months. I found this site researching my symptoms and reading research and articles by Dr. Towfigh about hernias in women and how difficult they can sometimes be to diagnose.

    I apologize in advance for the novel that I am about to write, (LOL) but want to explain, in as much detail, my struggle to figure out why I am in pain. I thank you in advance for taking the time to read through this.

    Symptoms:
    I have had persistent pain in the lower right quadrant about 3-4 inches in toward the midline from my right hipbone. I first noticed it around June 2017. I don’t remember doing anything that may have triggered the pain (e.g. lifting something heavy, etc.) The discomfort seemed to increase around the time of my ovulation up until I had my period. I would explain it as a very deep, aching pain in my abdomen, like someone was brutally squeezing the area around my right ovary. My pain is chronic, consistent and is always there 24/7. Nothing really seems to mitigate the pain. It even is uncomfortable when I lie down. I do not feel a bulge or swelling in the area of the pain. It seems very deep in my pelvic area.

    The abdominal pain has progressively become more intense over the past several months. The pain began to radiate to my right lower back area as a burning/pinching pain. The discomfort is severely affecting my ability to do everyday tasks and bothers me when I try to sleep. I can’t sleep on my stomach and prolonged sitting, driving, or standing makes the abdominal/back pain worse. Bending down seems to aggravate it more. OTC pain relievers barely takes the edge off, but it’s short-lived. I also feel the pain worsen prior to a BM. Since my hysterectomy, I feel pressure in my vagina/labia area and some cramping at the end of my urinary stream if my bladder is very full. I have loud/frequent abdominal gurgling sounds. I have had some issues with constipation and blood in stools. I am overweight (5’6” 210 lbs) and carry a lot of the excess weight in my stomach area. I have 2 children that were delivered via vaginal delivery in 1995, 2000.

    From what I have researched, what I am experiencing seems like what could be a small occult spigelian or inguinal hernia. Unfortunately, over the past month or so, I have started to notice a similar abdominal pain in my lower left quadrant area, just not as intense as the right sided pain, nor am I experiencing back pain on the left side. I understand that sometimes, hernias can present bilaterally.

    Medications:
    I take 88mcg Levothyroxine for an underactive thyroid, 100mg Zoloft for general anxiety and estrogen replacement therapy.

    Overview of the specialists, procedures, and imaging that I have had done over the past 16 months:

    Primary Care and GYN:
    June-Sept. 2017-Due to ongoing issues with long/frequent and heavy periods and extremely painful ovulation (primarily on my right side), I was referred to a gynecologist by my PCP after my annual physical in June 2017. Blood work ordered (CBC, hormone levels, thyroid). Results normal except for an elevated inflammation marker (non-specific) and my thyroid level was slightly off. Thyroid medication was increased from 50 mcg to 88 mcg.

    I had a transabdominal ultrasound which revealed a 4cm uterine fibroid, which was believed to be the reason for my cramping and heavy periods. I was scheduled for a D&C, cystoscopy, fibroid removal and uterine ablation. During the surgery, no apparent uterine fibroid was present despite it being reported on the transabdominal ultrasound from 2 weeks earlier. It was assumed that this was misreading by the sonographer/radiologist.

    Post surgery, I was still experiencing right sided pain, which seemed to now radiate into my groin area. A transvaginal ultrasound was ordered to see if there were any complications from the ablation/D&C procedure. The uterine lining was thin and nothing was found to be concerning. GYN referred me to GI to see if my symptoms were related to possible intestinal issues or caused by constipation.

    GI:
    Oct-Dec. 2017-When I reported some issues with constipation, blood in stool and feeling of incomplete emptying, GI ordered a colonoscopy. There were no concerning issues found (no inflammation, and no signs of intestinal disorders, tumors or appendicitis, etc.). The only issue found was a 30mm polyp that was removed from my descending colon (left side-opposite from where my pain was originating). Pathology was negative. My constipation issues seemed to improve after the polyp was removed, however, my right sided pain persisted. GI ordered a CT with contrast of the abdomen/pelvis. No abnormalities were found.

    Primary GYN:
    1/2018-Returned to primary GYN. I was put on a low dose progesterone for possible endometriosis and to stop ovulation. Medication did not improve right sided pain. Symptoms continued to worsen, so I discontinued the medication. Menstrual cycle returned once I stopped the medication, although the bleeding was lighter than it had been before the ablation in September 2017.

    PCP:
    2/2018-Appointment with PCP. Beginning around December 2017, a pinching pain began to radiate around to my lower right lumbar area in addition to the chronic RLQ pain. PCP requested a lumbar x-ray, as she thought it may be muscular/skeletal referred ligament pain originating from my lower spine. X-ray showed slight scoliosis and mild degeneration/arthritis. I was not convinced that the pain originated in my spine, since I had the RLQ pain months before the lower back pain started. I asked for a referral for a second opinion to another GYN. I was convinced my right sided pain was originating from my right ovary area/uterine area or it was chronic appendicitis.

    2nd opinion-GYN:
    3/2018-2nd GYN ordered another transvaginal ultrasound. This showed abnormal thickening of uterus post-ablation. Recommendation from the radiologist for a biopsy of the uterine lining. This was dismissed by the GYN, as she believed that I was perimenopausal and possibly had endometriosis. I disagreed, as I had never had issues with endometriosis and found it difficult to believe that this would suddenly be an issue at 47 years old. I refused to go on birth control due to my age.

    Telehealth PCP:
    4/2018-Taking issues into my own hands, I located a telehealth doctor who, after hearing my concerns, ordered a pelvic MRI with contrast that I paid for out of pocket. The radiologist indicated a very thick 16mm abnormal uterine lining recommending a biopsy.

    Primary GYN:
    5/2018-I returned to my primary GYN. After discussing the MRI results, she indicated that a uterine biopsy was not possible due to the scar tissue from the ablation. The right-sided pain continued to persist, so I asked for a total hysterectomy. I was still convinced that this pain was reproductive related after a failed ablation. She agreed to perform the hysterectomy. She also attempted to manage my expectations that although I had a complicated history with my menstrual cycle, it might not be the reason behind my RLQ pain. I wanted to move ahead with the hysterectomy. I had a complete laparoscopic vaginal hysterectomy (uterus, tubes, ovaries, cervix) on 5/9/18. The surgery revealed some minor scar tissue was present on the uterus posteriorly along with a hematoma on each ovary. Laparoscopy showed no other abnormalities of the appendix, liver, gallbladder, etc. It is unlikely that the GYN would have noticed an abdominal wall hernia if it was present during the hysterectomy because it was likely outside her scope of practice. Pathology ended up being negative for any endometriosis. All tissue was benign.

    7/2018-Unable to do more, the GYN referred me to the pain clinic doctor. In the interim, I began to see a chiropractor to rule out spine being the cause of the abdominal pain. I visited the chiropractor several times over a 6 week period and did not notice any improvement/relief in lumbar pain. Lying face down on the table for adjustments was very painful to my abdomen. Discontinued chiro.

    Pain Clinic Anesthesiologist:
    9/2018-Pain clinic doctor listened to my concerns over the phone, agreeing that doing a nerve block would be difficult not knowing where the pain originated from. I wanted a diagnosis, not pain medication. I asked if this could possibly be an occult abdominal hernia from my symptoms. He thought that it may be a possibility and referred me to a general surgeon.

    General Surgeon:
    10/2018-General surgeon couldn’t palpitate a hernia in the inguinal region (in a standing position with a forced cough or two). She didn’t examine other parts of the abdomen thoroughly or ask me to perform a valsalva maneuver while standing. She ordered an open pelvic MRI to rule out a hernia or muscular skeletal issues. MRI (no contrast) showed no abnormalities in the abdominal wall, but some early bilateral hip arthritis and lower spine degeneration. Surgeon thinks that it could be spine/neuromuscular related or fibromyalgia (highly unlikely as I don’t relate to the symptoms that are typical for fibromyalgia). I am currently being referred out to a neurologist for possible spinal MRI and nerve testing.

    All of my diagnostic imaging/scans (CT, MRI, ultrasounds) have been done in laying in a prone position without performing a valsalva maneuver. Although I can’t palpitate any bulge, I feel that this could be an occult hernia and it could possibly be presenting bilaterally.

    I have ordered my medical records and asked that all of my imaging be sent to me on CD. I’m not sure where to go from here…I would be grateful for any advice on whether my symptoms sound like they could indicate a hernia. Thank you, everyone!

    deb replied 6 years, 1 month ago 1 Member · 0 Replies
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