Chronic Pelvic Pain

I started my periods aged 11 and they were painful from day one.  Dysmenorrhoea (ie excessively painful periods) is common amongst even the healthy population and suffered by up to 75% of women but it’s even more common in Ehlers-Danlos patients with a suggested 92% of women having painful menses.  When I could take pain killers it wasn’t too much of a problem – a few Feminax or some Mefanemic Acids tablets and it was down to a dull roar and I could carry on my normal life, but when I became allergic to painkillers in my mid thirties it became much harder to live with.

There are various theories as to why having EDS causes excessive period pain but in truth we don’t conclusively know the reason.  With up to 75% of healthy women also having dysmenorrhoea there are factors involved which obviously have nothing to do with EDS and in my mind EDS just complicates an already common problem.

When I hit 40 my EDS got much worse and on top of that my (pre-existing but largely a-symptomatic) Mast Cell Disease went nuts.   About 10 years ago I developed lower, right abdominal pain.  It’s a stinging pain.  It doesn’t come and go, it’s there all the time, but it does get much worse when I ovulate and during my period.  I had investigations and my right ovary looked totally healthy.  Endometriosis was suspected but the only way to know would have been a Laparoscopy and for that I needed a general anaesthetic – no way Pedro, not after I’d already had a reaction to general anaesthetic after having spinal surgery when I was 16, longgggg before my MCAD caused me any drug issues whatsoever.  Gawd knows what would happen now!

Over the last decade my pelvic pain has gotten worse.  Much worse.  Ovulation, whichever side it’s on, can be excruciating.  For 4-5 days before my period I suffer stomach cramps, increased lower back pain and bowel pain (which can get so bad I have to do labour breathing when I poop) and for the 3-4 days of my actual period my entire pelvis and the tops of both thighs feel like they’re on fire.  This often doesn’t settle down until I ovulate, up to 14 days later – I’m not saying it goes, just that it becomes tolerable.  So I’m basically in pain all the time.  A burning pain, which radiates down to my groin and pelvic bone on the right side and goes across my lower abdomen.  And on top of that I have the constant stinging pain on the right-hand side which I always assumed was a problem with my ovary.  It’s not a lot of fun.

The Gynae Consultant on Monday seemed perplexed by my pain.  Both my ovaries look totally healthy.  I’ve obviously had various cysts over the years but they’ve all resolved – many women get monthly ovarian cysts, sometimes quite large, and they don’t cause the constant pain I have.  I may have endometriosis which is notoriously difficult to diagnose, though if there were adhesions sticking any of my organs to each other this would usually be seen on an MRI and my MRI in November was totally normal (other than finding a 5cm right ovarian cyst which has now disappeared).  Pelvic Congestion, where the veins in the pelvic area expand (more common in EDS) would also usually show on MRI and mine all look tickety-boo.

I do have lots of uterine fibroids, both internal and external, and fibroids can be painful.  But from reading various online message boards about fibroids the pain experienced is nothing like the pain I have so I’m doubtful they’re the cause of my issues either.  To think I could go through the trauma of having a hysterectomy and still be left with the pain totally freaks me out.

There is always the niggle in the back of my mind that my pelvic pain is down to my bowel and nothing whatsoever to do with my lady bits.  I get sharp, stinging pains from my stomach to my backside, alongside chronic burning pain which can only be inflammation.  A belly MRI 5 years ago showed a totally healthy GI tract though, from stomach to bum, so again if anything serious were going on surely to goodness something would have shown up.  I’m sure my entire GI tract is chronically inflamed but would that cause the kind of pelvic pain I’m enduring?  I really don’t know.  When I talked to the Gastroenterologist he thought some of my pain could be Gynae related, and when I talked to the Gynae this week she thought some of my pain could be Gastro related!

My worst nightmare is that I undergo the trauma of surgery only for them to open me up and find a totally healthy looking pelvic area.  No endometriosis, no scarring from previous burst ovarian cysts, and no real explanation for my pain.  It could simply be chemical from my MCAD (mast cells leak mediators which cause chronic inflammation and the uterus is packed with mast cell receptors) and, as I struggle to take any of the drugs used to treat Mast Cell Disease, I might just be stuck with it.  Forever.  Somebody shoot me.  Or maybe having my fibroid packed womb out will at least help, if not cure.

Like most issues with my body there just are no easy answers.  You can only do what feels right at the time and, if I do get to have my womb removed I don’t think I’ll regret the decision for a single second, even if the op and post-op period is rough.  Having had dysmenorrhoea for 37 years I’m just over it and the thought of never having another period in my life sounds like heaven.  If my ovaries are healthy I’ll get to keep them which, given my family history of early osteoporosis, would be beneficial and means I can have a more gentle slide into menopause.  I’d also like to keep my cervix, cos I’m not sure how orgasm works without one (and no-one seems to talk about that on the message boards!).  This all might be a mute point though as the Anaesthetist might say surgery is just too risky given my MCAD/drug allergies.

I’m having an MRI scan tomorrow (Friday) which will give a better view of my fibroids then I have to wait for an appointment to see the Anaesthetist who will decide if surgery is an option.  Wish me luck.

p.s. I should have made it clear that I don’t have heavy bleeding with my periods, quite the opposite.  I always thought fibroids caused heavy periods but according to the Consultant if they are on the outside of the womb they have no effect on bleeding.

 

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13 thoughts on “Chronic Pelvic Pain

  1. shelley

    Have you looked into any blood disorders? My daughter has Von Wildebrand disorder. It is a blood disorder that causes heavy bleeding especially during periods. There are things you can do to help. My daughter also had EDS.

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    1. Jak Post author

      Thanks Shelley but I don’t have excessive bleeding, in fact my periods only last about 48 hours. I asked the Consultant and she said if fibroids are on the outside of the uterus they have no effect on menstrual flo.

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  2. Glo

    I hope you find some answers and some relief. Keep us all posted. I really hope they find an anesthetic they can use. Things have changed a lot in the world of anesthetics.

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  3. Wendy Copeland. CEDS

    Just a thought….stinging, burning pain can be nerve related, and so, related to spinal problems. If you continually have the regular MRI, they may see nothing wrong. I went 10 years with that kind of pain and they would do the regular “lay flat” mri and it showed nothing (cuz everything sort of settledinyo place as I laid down. It was only when I finally had a “functional” mri (ditting up and bending forward and back that they could see my vertebrae cut into my spinal cord when i bent forward. Don’t know if they have them there, but diagnostically, they are great!

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    1. Jak Post author

      Thanks Wendy. We do have upright MRI scans in the UK but they are few and far between – not sure how I’d get referred for one.

      I’ve had back pain since I was 11, so there’s definitely something going on with my spine they haven’t gotten to the bottom of.

      My current pelvic pain could be so many things it’s just going to be trial and error to discover the cause I think. Jak x

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  4. Karen, The Walking Allergy

    I was thinking something similar to Wendy. If my lower back and scrum are out, my period is WAY more painful. I know you can’t do the chiropractor, but perhaps an osteopath? It’s certainly worth a quick assessment. Maybe you could add an MRI of your spine? With the EDS, I’ve realized that my back can be WAY out, and my back doesn’t hurt. The pain usually shows up more when nerves are getting impeded.

    By the way, I’m so impressed with my friends national medicine doctor. I should have gone years ago. The example of the four blind men trying to figure out what they have found. They will think it’s tree trucks. (Well, until it starts to move…). The functional MD found stuff that everybody else had missed. She is not focussed on treating symptoms, but on the underlying cause (as I said to a different doc at the same clinic the other day “It’s all well and good to look for the root of the problem, but I do have to remain alive in the meantime.”) Okay, so I have MCAS. What caused it to go nuts? Is it genetic, epi genetic, environmental? She was the first doctor who looked past electrolytes and iron to see where I was deficient. One thing- my zinc was almost non-existent, my copper was very high. (They need to be in balance with each other- if either is high, the other is low. High copper can really slow down your brain.) High enough that she said that she considered suggesting chelation therapy, but she decided that for my body- nothing sudden, nothing big. (I practically hugged her when she said that!!). She said “We aren’t going to change more than one or two things at a time.” (I wanted to plant a big smooch on her face for that!!). She had zero interest in the antihistamines I was on “Meh. We’ll get rid of those once we have you running better. You don’t want to be on them at all, really. They’re nasty drugs; our goal is to have you not need them.” (I think I might divorce the Hubs and marry her).
    In any case, trust your body. Listen carefully to the messages (I know, they are often impossible to hear over the joints complaining, the skin itching, etc. They have terrible manners- to loud, they interrupt. Really!.). Mentally scan your whole body. Western society teaches people to ‘push through’ discomfort, to ‘cover up pain’. If we were sick as kids- it was ‘Oh! Your eyes are swollen shut. Go wash your face, that will help.” And, if you are in chronic pain, your brain is also doing its very best to tune out the pain- but that dulls everything else, too. We often forget that our body knows what it needs. It’s very difficult at first- to tune out the cacophony, and listen to one ‘channel’ at a time, but with practice, it has helped me quite a bit. I was fortunate that my mother taught me how to do it as a child. (She couldn’t tolerate lidocane, so she didn’t have any anesthesia when she needed dental work…..she had some amazing mind control skills.). I remember a doctor telling me that I ‘couldn’t possibly’ be aware of when I ovulate. When I was trying to conceive, we got pregnant on the ‘first shot’. Right. I don’t need an ovulation detector.

    Trust yourself, if something is telling you the docs are missing a peice of the puzzle, keep looking.

    Oh, I must run. Off to the passport office! One day, I’m going to use it to travel to the UK. I hope.

    Karen

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    1. Jak Post author

      Glad you’ve found a Doctor you like Karen and who is helping 🙂

      My pelvic pain could be any number of things, there’s just no way of knowing yet. I’ll go down the gynae route and if that doesn’t help I’ll look at other things. Got my MRI scan today so that might shed more light on the situation.

      Jak x

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  5. mumtoatribe (Ten C)

    Oh Jak, sorry to hear you are going through this, but I wanted to encourage you to go get either the laparoscopy at the very least or just go ahead with the hysterectomy. I understand your apprehension with GA, but find an understanding anaesthetist and put your faith in him. Having worked in Gyne day pre and post op surgery I cannot implore you enough to get to the bottom of your symptoms. You will find out what is happening in there and can then take the steps to improve your pain based on what they find. based on your symptoms I am thinking it may be from a few sources. Adhesions (from endo) and fibroids are probably the constant pain you have and the intense one you get can be from the ovarian cysts rupturing and the liquid dissipating through the fibroids and possible adhesions. I know that pain well and only know that it is that because of an ultrasound I had once and the next one I have a few days later showing what was happening in real time. As to what your pain is, it might be simple, it may not be, but it is important to find out what is happening, because if it is a bad thing, getting treatment sooner rather than later saves lives.

    To answer your unanswerable question, I can help you there. The cervix is essentially the tail bone of the uterus and will be removed if you have a hysterectomy (I have heard occasionally of people keep that portion, but as to why, beats me, anyways it is not common to keep it). It is a very sensitive part of the womb, with lots of nerve endings and you will probably be happier without it. Your orgasms DO NOT come from the cervix, so rest assured that won’t be affected at all. Women have two types of orgasms, clitoral (external) and internal (gspot). I’d encourage you to do some light reading in that area to see what I am talking about.

    Good luck and keep us posted!

    Ten C

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    1. Jak Post author

      Thanks for taking the time to comment. I’m definitely pursuing the gynae route first – I don’t think I’d regret a partial hysterectomy for a second.

      There will have to be a big discussion about my cervix though. The cervix contracts during orgasm and, as you rightly say, is packed with nerve endings. There are studies now to show that sexual dysfunction/reduced sensation is more common after total hysterectomy than anyone realized, and as my cervix is healthy I’m not sure I want it gone. Of course it will all depend on the recommendations of the consultant. I think surgeons are far too gung ho about “whipping everything out” – wonder how they’d feel if it were their sexual organs!

      Jak x

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  6. Sue Fitzgerald

    Hi Jak,
    I came across your post from a search result. I see this is from April 2016 so I dont know if you have found any relief or if I can be of any help. I am an undiagnosed EDSer (I match the vascular profile so much it’s scary). Unfortunately I was adopted so no backwards family history. My dad said I “looked like a road map” when they adopted me because of how visable all my veins were. I dismissed EDS at first because I didn’t know we hat hypermobile meant. A few months later after requesting my records from Mayo, EDS kept coming up on the searches I was doing on my documented history. I filled in the dots when I came across the Beighton scale. I think I about a 5 even with severe OA. It still didn’t make sense that I was still alive at 53, but it it hasn’t been without a progressive downward slide. I did have a cavernous hemangioma (slow bleed) in the basal ganglia in 1994 that affected my vision for a couple months (another documented in the spine). At this point, I am trying to get genetic testing for confirmation which is a challenge in itself!

    I am 53 and just had a stage IV triple prolapse surgery of the bladder, rectum, and uterus in July. I was embarrassed I let it go so long but I had to choose between that surgery or a total knee replacement in 2013. The knee outcome was an improvement but not what I had hoped. My scoliosis has progressed at an alarming rate. Now that I know a little more about EDS and scoliosis, it may be due to the fact that it has made my hips more uneven.

    Anyway, I ended up having a hysterectomy leaving the ovaries and cervix (still need to have pap smears), the bladder and rectum were adhered to the pelvic ligaments with a mesh. The surgeon made a comment about the condition of the connective tissue in my pelvis and I need to take a LOT of vitamin C. It was done laproscopically with the Da Vinci Robotic machine (5 incisions – thru navel and 2 more each side). They do a routine autopsy of the uterus and I did have endometriosis. I was on birth control most of my reproductive years due to dysmennorhoea, hormones out of whack except to have children so the endometriosis never bothered me. I got pregnant very quickly possibly due to the forced monthly cycle BC pills create. The few periods I had were horrible. My first child died at birth of gastrosceises and kyphoscoliosis (no idea at the time those conditions are related to EDS). I have two more awesome children in their late teens doing great but want to get them tested for EDS due to some related symptoms.

    I don’t know if you have already had surgery, if so I hope you are feeling much better if not I can provide more details of my experience before and after. Overall, I feel much better! The one thing I had never heard of is this whole nasty mast cell activation along with probably mild disautonima. It explains a lot of my childhood and forward. Unfortunately now it’s really catching up to me – lung PET scan scheduled, decreased kidney function, high diastolic BP, chronic uncureable anemia, chronic edema, frequent cellulitis, worse dysmotolity, electrolyte issues, and recently elevated liver enzymes?? So also have ultrasounds, echo-cardiograms, etc. scheduled. Just tired like everyone else – tired of losing days feeling too cruddy to do much.

    I wish you continued improvement with your current issues and feel free to contact me if you have any questions about the De Vinci procedure.
    Regards,
    Sue

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    1. Jak Post author

      Hi Sue

      I’m so sorry to hear of everything you’ve been/are going through. However you seem to be finally piecing the parts of the puzzle together, but it’s such a shame that it’s taken so long (it’s very common to not be diagnosed with EDS until middle age, and common not to be diagnosed with MCAD at all!).

      I got to the root of my pelvic pain in Apirl this year, having been diagnosed with extensive rectovaginal endometriosis and adenomyosis. I desperately need a complete hysterectomy as the endo has stuck to my bowel, bladder, pelvic ligaments, possibly spine and cervix, however due to my severe drug allergies (including anaesthetic and pain killers) it was deemed too risky. I couldn’t have a vaginal hysterectomy as my uterus is stuck to my bowel at the back plus other organs 😦 So sadly I’m just having to live with the pain. As I’m now only 2 or 3 years off Menopause I’m hoping at least I’m soon be spared the agony of periods, and just be left with the background pain of the adhesions etc. but time will tell.

      Jak x

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