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Low-grade chronic pelvic pain has been part of my existence for 30 years, but for the past 9 months the pain has been acute and elevated to an average of 8 on the 1-10 pain scale. It never goes away. The inciting incident was a PAP/pelvic exam. Those usually elevate the pain a couple of ticks from the normal low hum of 2-3 for a few days, but something was different this time. It was like a nuclear explosion of pain that has not responded to physical therapy, TENS, ultrasound, etc. I have bad reactions to most prescription meds that would be offered - pain meds, muscle relaxers, etc. PT helped some with muscles that were locked up, but the core pain hasn't responded to anything. I had to have a hysterectomy in 1987, so the pain has nothing to do with reproductive organs.

I've had many compassionate caregivers, but they are running out of ideas. Wurn Technique is the newest suggestion, but it is very expensive and my income cannot support the cost.

It's encouraging to find others with the same struggle, but I'm sorry so many are impacted daily by unrelenting pain.

Any ideas about possible treatments would be appreciated.

10 Replies

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  • You poor thing. That sounds just awful.

    I don't know what to suggest other than keep doing what you're doing and add things like yoga and meditation to your day? It might help?

    Do you ever associate the pain with emotion? I know when I'm grieving I get acute pain in my upper back, for example. And pain in my pelvic region with trauma related to that area. This is only a thought on my part based on my experience and please don't think I am trivialising your very real pain in any way. It sounds like you're doing everything you can and I can only imagine how difficult this is for you.

    Hope you find the help and support you need

    Best wishes

    El xx

  • Emotional upset does seem to impact the pain at times, but that's not consistent and wouldn't account for all that's going on, especially as there was a definite non-emotional inciting incident that elevated the pain. Thank you for your thoughts.

  • Hi

    Can I ask why you had a hysterectomy and did you have your ovaries out?

  • The ovaries were the acute problem - recurring cysts that created terrible pain. The gyno hoped leaving about a third of each one would work, but it didn't. There was no reason to leave the uterus, since he had to go back in to remove the rest of the ovaries. Or at least, it seemed to be the best thing to do at the time.

  • Can you describe the pain. If you are sexually active I'm guessing it's painful? Prior to the hysterectomy did you have period problems? As far as you know were the cysts functional (normal) - no mention of them being endometriotic? Have you had a pelvic MRI? Has endometriosis ever been considered? Have you been on HRT?

  • I have not been sexually active in several years. It was uncomfortable but manageable at the time. My periods were always irregular but they didn't cause pain beyond mild cramping, etc. The cysts weren't said to be anything but "normal." I have been on HRT. Since the surgery was when I was 31, it was considered a necessity. At this point, it is for bone health. No pelvic MRI. Do you think that would give helpful information?

    The pain takes several forms - sharp, throbbing, sandpaper-ish, burning. The throbbing increases when I lie down at night. The sharp pain is worse at some times and not as bad at others, but it doesn't fit a pattern of activity or food or stress.

    Thank you for your concern.

  • Have you looked into pudendal nerve problems? Having a hysterectomy many years ago was the start of my pain issues and as I progress through the years the pain has got extreme. I only found out about this nerve through this site after wasting years of tests and pain clinic appointments where no one was really listening to me. the last straw was being asked by the pain specialist if the pain was in my head. I was desperate and was in tears with the pain late one night when I found this site. Here I found many people with similar issues who put me onto different places for information and with reading and listening and finding out more for myself i was able to discuss the pain better with my GP and got referred to pelvic pain physiotherapists who do actually listen and to specialists in the correct field. Keep looking, this site is amazing for support and information. another you may wish to look at is pelvicpain.org.uk

    I wish you all the best as I really can identify with your pain

  • The two PT's had special training in pelvic floor dysfunction, and they checked that. It doesn't seem to be the problem. There's no pain to speak of in that area. But thanks!

  • Hi again - what is interesting is that it was the PAP/internal that triggered it so we can assume it was going near your cervix that did it. If you had been sexually active I think it is likely that this would have become more of a problem sooner. In any woman with long standing chronic pelvic pain and pain with sex one of the first considerations should be endometriosis. But I guess that if you were to suggest this to the average general gynaecologist you would be told you can't have it because you don't have any reproductive organs. But endo is much further reaching that those and as it is fed by oestrogen HRT can continue to stimulate it after hysterectomy if present at that time. Another aspect of your history that has raised some suspicion is your intolerance of medications. This is typical of endo because it is an autoimmune related disease and chemical hypersensitivity is common including to our own hormones and to synthetic forms such as contraceptives.

    It may well be a complete wild goose chase but must be considered. There is a form of endo that doesn't affect the reproductive organs called DIE (deep infiltrating endo) that is in the form of nodules (endo encased in fibromuscular tissue) and the most common site is the uterosacral ligaments in a place called the pouch of douglas between the back of the cervix and colon. These ligaments join the cervix to the sacrum and in the case of a sub total hysterectomy these hold up the vagina. It is pressure on nodules here that causes severe pain with sex or internal exams. These show on MRI and can also be palpated if a rectovaginal exam is carried out (fingers up bum and vagina at the same time) although it can be dependent on the length of the vagina and fingers involved. Even a vaginal exam can cause very severe pain if nodules are pressed and aggravated as there are nerves that run along the ligaments.

    I think it would be a good idea to revisit the surgical report of your hysterectomy to see if anything out of the ordinary was reported such as a retroverted uterus or the presence of adhesions that are associated with endo. The pains you describe could well be adhesions - if you imagine something tethered inside such as your bowel to your pelvic wall all might be well when you are upright but when you lay down the structures fall differently and this could cause an increase in pain. Shooting/stabbing pains are common with adhesions and can be triggered by movement. The pain of endo would be burning. You could have had adhesions form after your hysterectomy but it would be unusual for them to start causing problems after 29 years.

    Do you have any irregular bowel habits or back/buttock/leg pain?

  • Thank you for such a thorough reply! I have an appointment coming up with yet another doctor (urogynecologist) and will take this with me. As the pain started right after a very bad pregnancy, I've wondered if it is related to being nearly dehydrated for nine months plus the muscle stress of vomiting repeatedly (about 300 times, without exaggeration.) Bowels vary a little but no chronic problems, and no back/buttock/leg pain, except what is explained by a fall/compression fracture. I do have other autoimmune issues (Hashimoto's) so this is worth considering.

    The increase in pain was very definitely incidental to the pelvic exam. Immediate, excruciating ramping up of pain.

    Thanks, again!

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