Chronic pelvic pain (CPP, pain in the pelvis that is present for more than 2 weeks a month and has been there for more than 6 months) affects 15% of women and accounts for upwards of $2 billion a year in direct medical costs. To say it is a significant health burden is a gross underestimate at best. My entire practice is devoted to the treatment of pelvic pain and there are few words to describe the suffering, much of it compounded by societal misunderstanding of the condition (i.e. the misperception that it is “all in your head”). Many doctors also don’t understand CPP leading many women down what I can only describe as a rabbit hole of wrong therapies. This, compounded by the desperate need to “do something,” often leads to a hysterectomy.
The problem with hysterectomy for CPP is that it often fails to improve the pain. That is because the upper reproductive tract (uterus and ovaries) are involved in CPP only about 20% of the time. The challenge of CPP is that it rarely involves one structure. this is because the pain generators of CPP include everything that is in the pelvis.
If the source of the pain is truly the uterus then a hysterectomy may help, if it isn’t then it will not. With that in mind here is a short check list to help physicians and patients alike decide if hysterectomy might be an option for CPP:
1) Have you screened for irritable bowel syndrome? If no, you need to. Women with IBS have double the rate of hysterectomy than women without IBS as bowel pain is often written off as uterine cramping or endometriosis related pain. Visceral pain is very difficult to tease apart (bladder, uterus, ovaries, and bowel are all viscera or organs) because the pelvic viscera share much of the same neural connections. If you have IBS you want to make sure that is adequately addressed and then re-visit whether or not there are other causes of the pain. How to address IBS? The FODMAP diet and the probiotic bifidobacterium infantis are two good places to start. With diarrhea predominant IBS nortriptyline can be helpful and working with a pain psychologist can be invaluable in managing the stress triggers that can flare IBS. If you have IBS you must get off opioids as well as the risk that they are making your pain worse is very high. How many women with CPP have IBS? About 50%, so if your doctor recommends a hysterectomy before screening you for IBS get another opinion.
2) Have you seen a pelvic floor physical therapist? This is essential in the work up of pelvic pain. The abdominal wall, psoas muscles, and pelvic floor muscles are all big causes of pelvic pain. A pelvic floor PT can clear these structures or identify them as a source of your doctor isn’t trained to do so. A pelvic floor PT can also treat this pain. Many women and doctors mistakenly ascribe lower quadrant pain to the ovaries when it is really the obturator internus muscle. If you have muscle pain a hysterectomy won’t help.
3) Have you been screened for bladder pain syndrome? Also a common cause of CPP and one that will also not be helped by removing your uterus. Do you have a history of recurrent bladder infections that always come back negative on culture? Do you always feel like you have to go to the bathroom? Does it burn when you pee? Your doctor needs to screen you for bladder pain syndrome and treat accordingly. One good empowered way to start is to complete a bladder diary and bring it in to your doctor. Here is the link to the one I use. A stone cold normal bladder diary, no burning when you empty your bladder, no pain with a full bladder, and a bladder that doesn’t hurt on exam means your chance of bladder pain syndrome is low. You can also try taking phenazopyridine (one brand is AZO standard) for 3-4 days and see how that helps your pain. If it does help your bladder is likely involved. If it doesn’t help it doesn’t tell you anything except that AZO doesn’t help your pain (not everyone with bladder pain responds to AZO). If your doctor doesn’t know how to interpret a bladder diary or looks confused when you ask about bladder pain syndrome they are not the right person to help you decide on a hysterectomy.
4) Do you have biopsy proven endometriosis? Women with endometriosis, especially if they have stage 3 or 4 disease, are very likely to improve with surgery. There is even a study saying younger women can keep their ovaries if the disease is optimally removed at the time of hysterectomy. This is important as removing the ovaries under the age of 45 increases a women’s chance of cardiac disease. It is import to ask you doctor if they confirmed your endometriosis on biopsy as it is over called visually about 50% of the time. I have seen many women who were told they have endometriosis only to have a hysterectomy with no signs of the disease on the final pathology report. The benefit with hysterectomy with stage 1/2 disease is harder to predict. If you do have biopsy proven endometriosis but your disease is stage 1/2 it may be worth hormonally suppressing 3 or 4 menstrual cycles (either with birth control pills, norethindrone or medroxyprogesterone, or Lupron) to see how that helps the pain. If it helps a lot then endometriosis is more likely to be a pain generator. It is always a good idea to get a physical therapy evaluation even with biopsy proven endometriosis as muscle pain can be cyclic just like endometriosis pain. In addition, some women will have multiple pain generators so it could be both endometriosis and muscle pain. Just keep in mind that not everyone with stage 1/2 endometriosis has pelvic pain (just as not everyone with an abnormal MRI has back pain), so it is really worth while to try to do your best to see if minimal or mild endometriosis is trulythe pain generator.
5) Do you have uterine fibroids and your pain is dramatically worse during your menstrual cycle and other times of the month the pain is milder or more like pressure symptoms? A hysterectomy may very well help, but if your pain is debilitating for more than 2 weeks of the month then it’s time to rule out other causes. Stopping the bleeding for a few months can also help you firgure out how the fibroids factor in. No bleeding for 2 months = no pain then they definitely might be a factor and a hysterectomy may help. Also, see a physical therapist (PT). Regardless of what you see on ultrasound there may be other factors. Again, not everyone with fibroids has pain so before doing something irreversible (like surgery) it is always worth seeing a PT.
6) Do you or your doctor think that prolapse is causing your pain? It isn’t. Really, Many studies tell us that pain is not part of prolapse symptoms (including pain with intercourse). The bears repeating, uterine and vaginal prolapse does not cause pelvic pain. Symptoms of prolapse are a bulge at the vaginal opening and the feeling that something is “falling out.” As an aside, pelvic floor muscle spasm also feels like something is falling out, so before having surgery for that something-is-falling-out feeling try a pessary to correct the prolapse to see if that resolves your symptoms and have a visit with a pelvic floor PT so you can have your muscles ruled out as a cause.
7) Can you point with one spot to the pain? If you can, it isn’t your uterus or ovaries. Visceral or organ pain is vague by definition. It will feel band-like or crampy and difficult to localize. People with a heart attack (also visceral pain) don’t have pain over their heart, they have vague arm, neck, and chest pain/pressure. This is the same with uterus and ovary pain. It should be difficult to localize. If you can point to “the spot” then the source is much more likely to be muscle and/or nerve. Viscera do not have direct projections to the somatosensory cortex, so visceral pain is not pin point or easy to localize with one or two fingers.
There are also many, many other factors to consider so this is just a starting point, however, if these 7 easy to spot things were considered I bet we could ensure that many women who are likely to improve with a hysterectomy get the surgery that can help them and those who have other causes of pelvic pain might have a chance to get the treatment that can actually help.