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bladder infections, chronic pain, pain, painful sex

Hysterectomy for chronic pelvic pain? Ask these 7 questions first

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.

 

 

 

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Discussion

11 thoughts on “Hysterectomy for chronic pelvic pain? Ask these 7 questions first

  1. You lost me, Dr G, with the psoas and obturator internus problems—I do know what and where they are. Could you point to a synopsis of such problems please; and do men get similar problems?

    Posted by korhomme | May 3, 2014, 11:36 am
    • Psoas (or iliopsoas) is a muscle that runs in front of the spine in retroperintonealspace and then runs along the inside of the pelvic bone (ilium). It refers pain to the lower abdomen and pelvis. Iliopsoas

      The obturator internus is a muscle on the inside of the obturator foramen (outside wall of pelvis and inside wall of hip, as it were).It refers to the lower quadrants and vagina. Obturator internus

      Yes, it is my understanding that these muscles cause pelvic pain for men just as they do for women. The psoas is accessed abdominally for evaluation and work. In men the obturator internus muscle is evaluated via rectal exam.

      Posted by Dr. Jen Gunter | May 4, 2014, 8:11 am
      • Thanks. I’ve heard of psoas bursitis, though I’m not sure that it exists. As for obturator internus, I’ve only come across it incidentally in hip operations and a couple of times with an obturator hernia. But as sources of (chronic) pelvic pain? I’m not convinced.

        Incidentally, in the UK, retroversion of the uterus was a common diagnosis for pelvic pain at one time, easily ‘cured’ by shortening the round ligaments—something that did nothing for the condition.

        Also, ‘adhesions’ are often touted here as a cause of chronic abdominal pain. Now, I might just accept that adhesions over the ovary could prevent ovulation, or make it difficult—the ovary not having a peritoneal covering, so we’re told. But a cause of chronic pain? Bah, humbug!

        Posted by korhomme | May 4, 2014, 8:49 am
      • Typically if pain has an referral from the obturator internus, palpating it internally vaginally in women and rectally in men is very helpful. However, we can also palpate it externally by positioning the patient a certain way and directing our fingers just inside (medial aspect of) the ischial tuberosity. This is often missed as a component in abdominal pain or vaginal / rectal pain.

        Posted by Pelvic Guru | May 5, 2014, 6:45 pm
  2. These are excellent questions to help women determine if their uterus is most likely the cause of chronic pelvic pain. Before considering hysterectomy for chronic pelvic pain and other symptoms or conditions is learning about the life long functions of the female organs. The uterus is a hormone responsive sex organ that supports the bladder and the bowel. The vagina is shortened during a hysterectomy, and women who experienced contractions of the uterus during orgasm will not experience them after a hysterectomy. When the uterus is removed in women under the age of 50 they have a 3X greater risk of heart disease. If the ovaries are removed, the risk is 5X greater. Say no ’til you know!

    Posted by Nora Coffey | May 3, 2014, 4:27 pm
    • Thank you for commenting. However, the uterus does not support the bladder or the bowel. Also, sexual function does not change after hysterectomy. This has been very well studied. The most predictive predictor of sexual functioning after hysterectomy is the level of pre-surgery sexual function. The vagina is also not shortened if the procedure is done correctly. The cervix is removed at its attachment to the vagina. When a women does not have cancer there is no cuff of vaginal tissue removed. The risk of heart disease is with removal of the ovaries before the age of 45.

      I very much agree with leaving organs intact if they are not the cause of a health problem. It is unwise to have major surgery just to see if it might help as surgery is injury. Just removing the uterus because pregnancy isn’t planned is wrong and often causes health issues.

      Posted by Dr. Jen Gunter | May 4, 2014, 8:04 am
  3. Fantastic article! This is what we preach every day. This area of the body is so complex due to considering so many of the factors you mentioned – the visceral organs, pelvic floor and other nearby musculoskeletal structures, neuro/endocrine/hormonal factors, and pelvic prolapse and more. I learned an interesting observation from many GYN surgeons who deal with endometriosis – Some patients have relief of their pain for 2-3 months after surgery, but then it returns. This is likely an indicator that it was not the right surgery. The pain relief was likely due to the anesthesia or other types of surgical effects (per the surgeons – which I am not). There’s a misconception that scar tissue grew back in those 3 months and that is why they have the pain again. Not so.

    Thank you very much for including the pelvic physical therapy piece. We really do touch and treat structures/muscles that may be contributing to the pain in the area of the pelvis/abdomen/legs/back; and we also look at the individual as a whole – assessing breathing, movement, pain education, and other vital pieces that help with overall pain management.

    Cheers!
    Tracy Sher, MPT, CSCS
    http://www.sherpelvic.com

    Posted by Pelvic Guru | May 5, 2014, 6:41 pm
  4. Thank you SO much for this post! I am 26 and have been diagnosed with interstitial cystitis and endometriosis. I also get ovarian cysts what feels like EVERY time I ovulate, unless I’m taking preventative measures. Last September I had an ovarian cyst that measured over 6 cm, and was preventing me from being able to pass regular bowel movements. We did surgery to drain it, and to check on my endo (it was my third laparoscopy for endometriosis; they removed my appendix during the 2nd). My doc said it was the worst case of endometriosis she’d ever seen. Lucky me! :) After the surgery I was good for a few months, but had another painful cyst pop up in April, so I started getting Lupron injections. I started them at the end of April, and have had two now. They seem to be helping with pain from the endo and the cysts (I SWEAR I can tell the different types of pain apart at this point). I still have IC flare ups more often than I would like. Sometimes AZO tablets help, but recently they almost seem to make it worse. I cut out coffee two weeks ago today, and it helped almost immediately with the IC pain. My pain level hasn’t been above a 3 or 4 in TWO WEEKS (which feels amazing!) Going to try starting Elmiron again soon, as it seemed to help a bit the last time I tried it for a couple of months. I was about 19 at the time, and couldn’t get myself to take it regularly, so I just stopped taking it. It makes me nervous how much the word “hysterectomy” is thrown around as possible treatment. Or the “just pop out a kid” line. I would like to have kids someday, but certainly not right now. And I would like to keep my reproductive system intact for as long as possible. I also prefer to stay away from narcotics unless they’re necessary (like on those mornings when you’re at a walking event to promote activity among seniors for work and have to go home because your most recent ovarian cyst just burst). It is so nice, refreshing and informative to read your blog! I try to keep myself informed, but you never know what information you can trust. I am SO happy that I’ve found you. Just wanted to say, that when I have a cyst I get very sharp referred pain, that tends to be in one pin-pointable spot, along with my other uterus/ovarian issues. At this point I can basically walk into my doc and say “I have another one”. I’m usually even right about the appx. size. Sorry for such a long comment, but I almost feel like your blog is just for me. ;) Thank you for this, and I can’t wait to read your future posts!!!

    Posted by megwithablog | June 13, 2014, 1:37 pm
  5. Reblogged this on da Vinci Total Hysterectomy 2014 and commented:
    Fantastic article. Fantastic advice from Dr. Jen.

    Posted by elizabetcetera | July 9, 2014, 11:07 pm
  6. Good and helpful information about Hysterectomy for chronic pelvic pain. Thank you for sharing this to us.

    Posted by Aamiya | September 30, 2014, 4:03 am

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