Women with endometriosis know pain. It’s the hallmark of the disease. It’s something we live with day in and day out. And the degree of pain we experience on a daily basis is a level at which most individuals aren’t capable of functioning. Case in point: when I woke up in PACU following my surgery last week and was groggily complaining of pain, I had the following conversation with the nurse anesthetist (CNA):
CNA: “Laura, you live with a certain level of pain at home due to your endo, right?”
CNA: “What level is that?”
Me: “About a 5.”
CNA: “Ok, we’ll work on getting your pain down to a 5 before we hook up your PCA, ok? Just because we can give you higher doses of medication than your PCA will be giving you.”
However, not all pelvic pain in women with endo is due to endo! Meaning, just because you have endo doesn’t mean that all of the pelvic pain you experience can be blamed on endo. I learned this to be especially true when I had surgery last week. I wasn’t expecting any endo to be found because I had thorough excision almost two years ago. And thankfully, no endo was found, meaning I really am in remission! And hopefully that’s where I’ll stay for the rest of my life! The actual cause of my pain was a bit unexpected, but I’ll get into that later.
But what do you do if you have endo, had surgery, and start to have pain again? I had surgery in 2014 and then started to have pain again the year after. What can this mean? Let’s look at some possible culprits of pelvic pain beyond endometriosis.
1. Are you sure you had excision? This may seem like an obvious question, but it’s really not. All I knew about endometriosis prior to the first laparoscopy I had that diagnosed me was that it had to be treated with surgery. I had never heard of excision. My own OB/GYN performed ablation, which is a method of treatment that probably most OB/GYNs out there are using; simply using some form of energy to burn off the top layer of the endometriosis lesions. You might also hear the terms fulguration or cauterization. In these cases (so in reality, in most cases), the endo is only superficially treated, leaving cells behind to grow back time and time again. If you don’t have excision performed, there is a 40-100% chance of recurrence. That’s why it’s so important if you have endo to get to a skilled excisionist. And not just anyone who claims to perform excision either. Do they have data to support a low recurrence rate? Are they capable of excising from all tissues (such as endo on the bowel) or do they have a team that works with them that is capable? If not, you’re going to find yourself still with endo even after excision, because in most cases, endo can be safely removed from all tissues; it’s simply a matter of the skill of the surgeon. So if you want to have the greatest chance of having your endo go into “remission,” you need to do your homework.
2. Do you have any comorbidities? By this I am referring to diseases other than endo that can cause pelvic pain, such as adenomyosis, uterine fibroids, or interstitial cystitis.
- Adenomyosis is a disease that occurs when tissue that normally lines the inside of the uterus starts growing into the muscular wall of the uterus, often causing the uterus to enlarge and become sort of squishy. This often results in very heavy, painful periods with clots. Although presence of the disease may be suspected, the only way to definitively diagnose (and cure) adenomyosis is via examination of the uterus following hysterectomy.
- Uterine fibroids are noncancerous growths of the uterus that are often asymptomatic. However, fibroids can cause heavy, painful, prolonged periods as well as a feeling of pressure or fullness in the abdomen.
- Interstitial Cystitis (IC or painful bladder syndrome) causes the patient to experience bladder pressure, bladder pain, and/or pelvic pain ranging from mild discomfort to severe pain. This condition causes the need for frequent urination, sometimes up to 60 times per day. Patients may experience pain as the bladder fills and relief after urinating. IC is often know as the “evil twin” of endometriosis due to its frequent appearance in women with endometriosis.
- Pelvic floor dysfunction (PFD) occurs when the “sling” of muscles that makes up the pelvic floor are either too relaxed or too tense. This causes great difficulty in the coordination of contraction and relaxation of these muscles to allow for normal bowel and bladder function, including urination, defecation, and sexual intercourse. Urinary symptoms may include frequency, urgency, hesitancy, pain, and inability to empty the bladder. Bowel issues include constipation, straining, and pain. Intercourse may be painful and may cause muscle spasms.
- Adhesions. There’s an excellent blog article I found about adhesions that might be worth a read…wink,wink.
3. Are you having an acutely painful condition? Some painful conditions may masquerade as endo pain.
- Appendicitis is something I know many women with endo have been worked up for during an acute pain episode. Due to its propensity to be attacked by endo, the appendix is often removed at the time of an endo diagnosis (Raise your hand if endo ate your appendix! ME!!!!)
- Ovarian cysts are fluid-filled sacs that form in the ovary during ovulation and are usually asymptomatic and harmless. However, cysts may become large enough to produce pressure, bloating, swelling, and pain in the lower abdomen on the side of the cyst. A sudden sharp, severe pain may occur if the cyst ruptures.
- Ovarian torsion occurs if the ovary becomes enlarged enough that it begins to twist, cutting off the blood supply to the ovary, causing it to die. Pregnant women or women with tumors on their ovaries are at higher risk for ovarian torsion to occur. Torsion is often associated with a severe, sudden-onset, unilateral pain in the area of the lower abdomen. The pain may radiate to the back, pelvis, or thigh and is often associated with nausea and vomiting. Laparoscopy is critical for treatment.
So where does my story fall into all of this? As related in my post Always A Zebra, everyone definitely expected to find adhesions when I went into the OR. Dr. Sinervo had been able to tell on a pelvic ultrasound that the right ovary was slightly out of place for some reason, presumably an adhesion binding it to the pelvic sidewall. But when he opened me up, it was a surprise to everyone that he found a broad ligament hernia, through which my bowel was peeking and causing…intermittent ovarian torsion.
August 31, 2015: “I woke up again at 2:20 pm and the pain was just as bad. I got up and took some Motrin, but quickly realized when I doubled over in 10/10 pain that the Motrin wasn’t going to cut the mustard…the pain was a constant 8.5/10 for awhile with spikes up to 10/10. I was actually crying; I haven’t felt pain like that in a long time. Thankfully, the Percocet kicked in by 3:30 pm…We’ll see what happens. If it’s anything at all, I’m inclined to believe it’s either a cyst or torsion. Too early to be a tubal pregnancy. I’ve never had it get that bad just from the adhesion. So who knows?”
Thankfully it was only intermittent, otherwise my ovary could have been damaged beyond repair, especially if the above incident last summer was indeed the first occurrence of torsion in this whole mess. But in the OR, everything was put back in place and the hernia was sewn up.
So what’s the take away from this? Just because you have endo and you have pelvic pain doesn’t mean that endo is the only source of pain. Be vigilant about how your symptoms appear and you may be able to detect differences that may save you a lot of trouble (and pain) in the long run.