Extreme Pelvic Pain - no diagnosis can be found. Ideas?

When I first got my period at about the age of thirteen, it was relatively light and pain-free. Only at about the age of sixteen or so did I start to get cramps. By about eighteen they were out of control - I would be in so much pain I would end up on the bathroom floor crying and I was taking three times the dose of anaprox then I was supposed to, still without much relief. I had been on the pill since I had become sexually active (at seventeen) and my doctor had switched me to Seasonale so that my period would only be every three months. The cramps continued to worsen and sex started to be painful - with a deep pain (after being with the same partner for just over a year).

At this point my mother took me to a new gynecologist who did a pelvic ultrasound (it showed nothing), and endo-vaginal ultrasound (likewise, clean) and since they could find no immediate cause, instead he decided to try a few different contraceptives to see if any of them would be more effective. My pap smears are always clean, I was not nor have I ever been pregnant and my STD panel was clear. Over the course of the next year we tried the depo-provera shot (which did not help the cramps but did make me extremely emotional) and the nuva-ring (likewise no change). At this point the cramps were so bad that there was at least three days a month that I was missing my university classes and my doctor was now proscribing me oxycodone for the pain (where usually I don't even bother taking advil, preferring to tough it out), on top of which my sex life with my boyfriend was nearly impossible because it was too painful. At that point in May 2010 I opted for a laproscopy to see if anything could be found that way, but afterwards the only diagnosis my doctor could offer was "phantom pelvic pain".

That diagnosis made me feel like a mental patient, so I went to see my GP who recommended a colleague of his in gynecology who had a more creative flair. She decided to try the Mirena IUD (which my previous gyno had been reluctant to proscribe because I was only twenty one and had never had children). After about three months this seemed the magic cure - while I still didn't have a diagnosis, the Mirena stopped me from having my period and that stopped the cramps. My sex life returned to normal and I basically felt like I had my life back.

That is until the end of April 2013 that I got my period again, completely out of the blue. It only lasted for two days and it was so light I thought it might just be stress related, but it happened again at the end of May, only worse and for longer - so I made an appointment with my gyno for mid-June (soonest they could fit me in). The period at the end of June was like one of my old periods - I missed three days of work and the oxycodone just barely made it tolerable. My doctor sent me to get a new endo-vaginal ultrasound in hopes that the IUD had just become dislodged, but it was perfectly in place and all they found was a small cyst on one of my ovaries - consistent with the fact that I was just finishing my period.

There seems to be nothing physically wrong with me - except that after two years with no change I have started getting my period again and it is still as painful as it was. I am now twenty three years old. Unless a diagnosis can be found, my doctor has suggested I start considering more radical surgical options, like severing the nerve attached to the uterus. I am hoping for a less invasive alternative - I was hoping someone on this specialized forum might have an idea what is wrong with me?

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  • Have you tried the OCP at the same time as the Mirena IUD ? Also have you had an MRI scan to look for pathology that may not be visible on an ultrasound scan ? severing the nerve attached to the uterus is a very specialized procedure that few surgeons have experience in doing so I would be very cautious about this. Where in the USA are you based ?

  • Up until two months ago, the IUD was working find on its own, so we have yet to change anything. Has there been success in the combination of the two? The pill was what I was using just as a contraceptive when this problem began, so it didn't really seem helpful then... We were hoping the Ultrasound was going to show that it was out of place and that that was the only problem. Alas, no. The MRI is a good idea, I will suggest it. In perusing other posts, I saw that a lot of people seem to have success using the anti-depressant Amitriptyline to help control the pain. Do you know anything more about this, or if it might be useful in my case?

    Such severe surgical options were mentioned as a possible course of action if no diagnosis and/or effective treatment can be found... It is a long way off if it happens at all, but it seems a better option than something like a hysterectemy... especially because no one can seemingly find anything physically wrong with me.

    I am located in Montreal, which is in Canada not the US. As our second largest city, though, I have pretty good access to medical expertise.

  • One last question I thought of: are there any painkillers that have been found to be particularly effective with pelvic pain? Oxycodone (on top of being a fairly unpleasant experience on its own and making me sleep sixteen hours out of the day) has only been moderately effective thus far. Anaprox isn't much better than a placebo.

  • The OCP ands IUD in combination can be considerably more effective than either of them alone. Also amitriplyline can help in some patients. It may be worth trying one of these to start with but not both at the same time as you won't know what if anything has helped.

    There are several very notable pain specialists at McGill including the current President of the IASP who was at the recent 1st World Congress on Pelvic Pain.

    Hope you make some progress and let us know

  • Is there a particular OCP that is recommended or is that subjective?

    As for this pain management expert, I will definitely be in touch. What is his name?

    Thank you so much for all your help, you've been so kind :)

  • It's generally the low dose oestrogen pills that are prescribed these days but you may need to try more than one as people vary in their response. The pain expert at McGill is Fernando Cervero but there are sure to be others there too. Good luck and let us know how you get on

  • Amitriptyline made my hair fall out. No one told me about this, so just wanted to let you know (this doesn't happen in all people, but when it happens to you, it's unnerving.

  • See a gyn that specializes in vulvodynia..see a reproductive endocrinologist. Don't have any surgery until you get a second and third opinion. Make sure to use find top rate docs in your area. Search the internet for possible diagnosis to present to your doctors at first visit. Pamelor has worked well for my non specific excrutiating pelvic pain and periods that had me screaming in agony. Its an antidepressant used to treat nerved pain.

  • Hi Mereid,

    Looks like this therapist

    new-hypnotherapy.com/

    ....is successfully treating pelvic pain.

    I encourage you to give it a try,

    Good luck.

  • You may want to be checked for Lyme Disease. Few people are aware that Lyme can cause pelvic pain.

    Steffie

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