Unexplained Chronic Pelvic Pain

Signs and symptoms
1

I NEED HELP!!  [sad]

I'm 25 and I've been suffering from pelvic pain for 5 years. The pain comes and goes, but it's increasing in recurrence. In the first years, I used to be in pain during ovulation and menstration only... but today, i'm in pain most of the time. The pain is however very distinguishable: the flare-up lasts for 30 to 45 mins and it would only go away if I hold still. There are days where the pain occurs 7 to 8 times... Sometimes i'm in pain before/after bowel movements and/or urination. I'm always in pain after sexual stimulation or orgasm (even in my sleep) coupled with dizziness and sweat. I wake up almost every night due to pain, or to pee (and then the flare-up happens). I've done all possible check-ups and been even admitted to the ER once. I did:

- Urine Culture (the found e-coli once, but it was immediately treated by antibiotics)

- CT Scan for pelvic region

- MRI for pelvic

- Colonoscopy (normal colon but spastic, so they thought it was IBS at first)

- Cystoscopy and cystomanometry (both of which were normal, but i was in pain when the bladder was filled. Same nature of pain, but much less the horrible flare-ups i normally get)

- Eco pelvic

and the list goes on... 

The only noteworthy thing they found in all was the presence of many little fibroids. However all my gynecos told me that these shouldn't be THAT painful. Another gyneco suspected endometriosis and prescribed "Visanne". He had told me that if i get better while i'm on visanne, this would mean that i have endometriosis.. not only did i not get better, the pain got was ten times worse. I also took various IBS medications but to no avail. 

Yesterday a new doctor i visited, suspected that I might have pelvic congestion syndrome and asked me to do a special ultrasound. Although, PCS seems to be the closest I'm scared this might be another misdiagnosis especially that i am in pain every other morning... and I heard that pain with PCS occurs mostly at night. 

At this point I'm just scared, in pain and borderline depressed. I need to find a cure... my professional and love life are falling apart and i can't do anything about them. 

If your symptoms were like mine, please help me. 

2

Hi Laura

so sorry you are suffering so much. Like you I have had so many tests and different diagnosis Mri,ct,3 sigmoidoscopies even bowel surgery..I am currently under pain clinic for injections in pudendal nerve scans reveal engorged pelvic veins one doctor seems to think the veins could be compressing the nerves,but trying to find somebody to look and treat if it is this is impossible,I have been passed about from doctor to doctor.. I have joined a fabulous Facebook group pelvic congestion syndrome uk.lots of people with great help and advice on it. Most of the NHS area are doing research programmes into PCS but I'm deemed too old at 54 but you are not.good luck with your search for answers and relief 

karen x

3

Hi Laura

Sounds like you are US based so I cant recommend Physios as we are in the UK. You have pelvic pain syndrome, read-up info by Amy Stein, find a therapist who treats pelvic pain. Yes it could be the fibroids, or it could be your muscles have gone into spasm and wont relax, this cause acute pain! Get a Womens Physio who treats pelvic pain and they will help you get to the source. No medication will help and here inthe UK GPs now refer pelvic pain patients direct to specialist Physios who work on releasing the pelvic pain. You'll need to look up search like myofascial releas massage, IC relief etc.

Hope this helps

Stephanie

4

I am pretty impressed that someone thought of PCS (was it your GP or gyn may I ask please) and have you checked.

Heard that ultrasound but also MRI is used for it. 

Go for it since exclusion is peace of mind.

Here where I am, they put on into the 'brain hypersensitivity draw after a trigger' very very quickly (6 weeks pain, that's it, it's own dynamic now, just live your life and do happy things, see a psychologist) and no more testing since testing told the brain, that you were sick ???....I believe that can happen, but I disagree that it was that simple for each and everyone.

I find exclusions good and if PCS was found, it can be tackled. In the meantime, since chronic, you do have time to explore all other options like mentioned (relax pelvic floor), too. It can't harm. 

It's frustrating and wish you all the best!

But hurray you get another option checked/excluded/confirmed. It's a step closer to knowledge! 

5

I feel your pain! I hope this doctor is able to find the underlying cause and cure it... and this point, that's my only wish! I don't care if it's a scary or silly cause... just tell me what it is please and let's stop the pain!

It's crazy how many misdiagnoses one has to endure until they finally reach a conclusion or decide to give up! hope you find relief! I'll keep you posted if I have any updates. Thanks for reaching out  

6

Hello! I just googled the book and will be buying it soon. The thing is i did visit a physical therapist once but she really didn't know what the hell she was doing. I always knew though that physical therapy could help me and that I was just out of luck with the doc i chose. I'll check out the book and look more into it and will keep you posted! Thanks!! 

7

Actually I went to 4 gynecologists, 3 of them were useless, the last was okay. He suggested pelvic congestion but offered no diagnosis method except a laparoscopy. After going to a Uro and to an IBS specialist, I went to a guy who seems so knowledgeable... He suggested an ultrasound because i had already done an MRI.. but the nice thing about him is that he asked for a specific radiologist to do the ultrasound. (I live in Lebanon). He also asked for all types of blood tests, some that will be sent to the US (food allergies etc) and he gave me 

a medicine that I should only try after i've done the ultrasound. 

I'm going to explore pelivc relaxation techniques at home in the meantime too. 

I really don't want to believe that "it's all stress-related" before i rule out ALL other forms (and i mean literally all other forms) because my older sister suffers from the exact same thing... but sadly for her they put her on heavy pain killers ever since she was 17, she's now 32 and addicted to them. They messed with her life so badly.

Part of the reason why I want to know what's happening with me is to help her stop those medications as well... I'm sure what I have is hereditary. 

Like you said, this is going to be one step closer to knowledge :D 

8

Oh no, so so frustrating (to have to go to so many docs, and one has to show quite some perserverance, isn't it. At a point one feels realy discouraged.).

one thing to MRI pelvis: 

The routine MRI for pelvis (an overall look at organs) does NOT exclude pelvic congestion syndrome. MRI is not MRI even in same region, it needs a certain indication and according to that the protocolls (with/without contrast, which field strength, which timing, slicing) are chosen. Like you can have a native without contrast brain MRI to look for a tumor, but again a different brain MRI  looking at the blood vessels with contrast, which were not visible in the other native brain MRI at all. So the first native brain MRI says 'normal'...according to what it could make visible. Blood vessels could still be abnormal.

The MRI is one of the best methods for PCS too like ultrasound, BUT it needs a certain protocol, an MR venogram or time-resolved MR angiography. If you had contrast (gadolinium) in your arm vein during pelvic MRI, that's good and arteries can be seen (like aneurysms), but if it was not time resolved, it does say nothing about veinous reflux. If you had no contrast agent, there was no way to see any blood vessel anyway.

So yes, please have a look which kind of pelvis MRI you had,

and what was stated on result (you can have print out copy), needs to be stated on result 'no veinous reflux seen' or so to have excluded that re MRI. I would be surprised if the one and only pelvic MRI looked at that already. 

SO glad you get to an experienced sonographer! That's really, really good and sounds very promising!

Endometriosis can only be really excluded via diagnostic laparoscopy. There are 'deep endometriosis' scans via ultrasound (and after bowel emptying prep) possible, but not 100%. Again it needs an experienced gyn.

I agree, you want to have everything ruled out before being put into the 'nerve' draw. I understand the argument of the pain specialist though: we cannot see or scan for firing nerves and how the brain reacts and not let go either, the argument, that some had a lot of endometriosis and no pain and others a tiny bit and massive pain, hinting that the brain interpretation was wrong (not stress related, but brain interpretation too strong on pain trigger). ?. But being put into this draw prematurely is just not on.

Good good luck!!!!

9

Hi Laura, you are doing the right thing to find a solution, that does not include pain killers. I think we are all starting to understand the problems associated with addiction. The pain killers just mask it, they don't treat or solve the problem. You will need a specialist physio - keep looking - there will be one who knows about this. The problem too with pain killers is that they cause constipation, mix constipation with a 'in-pain' pelvic floor and this creates havoc. Repeated straining to poo and tightness in the pelvic floor stops it working correctly and will lead onto other problems. Such a shame, but the internet is great beca8ise women like you have a voice and there is help available - keep on with your quest and dont let up. In fairness to the clinicians it is so difficult to diagnose, and referred pain confiuses matters even more. Keep on and shout when you have the solution - there are hunderds and thousands of women just like you.

Good luck

S

10

Hi Laura another test they do at a specialist clinic here in the uk The Whiteley clinic in London is Doppler ultrasound Dr Whiteley is apparently the uk leading specialist in pelvic congestion diagnosis and treatment he says its gold standard test for PCS x