Not sure what is wrong with me, any advice would be welcome x

Hi all, sorry for the long post but wondered if anyone could offer advice as to what is wrong with me!

I have been suffering from constant pain for 2 years now and it is affecting my life in every way. I am no longer able to work due to unpredictability of the pain. I am in pain almost every day, some days are worse than others and pain free days are few and far between. The pain started in my right rib area which spread to my pelvic area, back and sometimes in my left leg and foot. Quite often I get sharp stabbing pain in my groin area. I am constantly tired and some days it is an effort just to move. I experience occasional spotting between periods (my periods are regular but very light, last about 5 days and are extremely painful) and sex can be painful (mainly afterwards not during). My abdomen is constantly bloated (can't fit into some of my clothes anymore although I havn't put any weight on) and it feels almost as if my insides are pulling down, as if they are ready to drop out! I suffer very occasionally from constipation and sometimes slightly loose bowl movements which my Doctor has put down to IBS, although I am not sure if this is the correct diagnosis as nothing seems to trigger it, have tried cutting out certain foods which hasn't made a difference and stress doesn't seem to affect it. I have had ultrasounds, a CT scan and endoscopy and so far they have only found 2 small liver hemangiomas (non-benign birthmark type lesions that don't cause pain) and nothing else. I have had numerous blood tests of which one said that my white blood celI count was low and one said I had a slightly elevated CA125 count but nothing to worry about. I am currently awaiting results from a hysteroscopy where samples from the lining of my womb were taken and the neck of my cervix was cauterised as there was slight erosion. My doctor has put me on anti-depressants due to the effect that this is having on my life which I feel are helping me to cope better with my situation and I take Tramadol for the pain.

Apologies again for the long post! xxx

8 Replies

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  • Hiya

    My problem is quite similar to yours.

    I have had severe pelvic pain the last 10 years. No cause for the pain was found by the 8 doctors I have seen for it. I have had a laproscopy for suspected endometriosis but everything was found to be normal.

    The intense pain usually lasts 5-10 minutes which leaves a milder throbbing sensation for hours. It's worst in the mornings and wakes me up at around 5. I do have some good days after my period but it returns when I have had sex. I have absolutely no interest in sex because of the pain and feel like ending my marriage because of the stress and lack of support from my husband.

    I have the bloated and cramped feeling in my pelvis most of the time, I feel conscious about it and it affects my social life and I do not enjoy physical activity due to this.

    I am so glad to hear that there are other women who have the same problem and it is not just something in my head!

    I am going to see my GP (I moved to UK recently and have not seen a doctor for this yet). I hope I can find an answer for this some day!

  • I'd see what the results are of your hystoroscopy and go from there, i suspect the results from the procedure might answer your question., I know that if you have ovarian cysts you can sometime have elevated CA levels, but presume that all your tests haven't shown any which is good.

    The bloatedness sound like something in your diet that isn't agreeing with you, hence IBS symptoms, wheat and nuts are classic for being bloated, but your have to be dedicated to find the cure, you can have allergy tests.

    You don't mention your age, have you had children, the pulling sensations could relate to maybe a prolapse of some sort, dryness in the vagina is another cause.

    What you have is referred pain but you need to find out what the main problem is first, of course that is what we with pelvic pain all look for and it can take years of dedication and perserverance to find out. Keep us posted.

  • I am sorry I am unable to give you any answers but swimming is one activity which appears to give me some relief. It also lifts my mood and the pain is less intense.

    Maybe you can see if swimming helps?

  • The only thing that I can pick up on and identify with is the sharp stabbing pains (you mentioned groin) This could be nerve pain, as Jacquie (waves :)) said it may be referred pain as nerve pain often can be.

    Nerve pain is quite different from 'normal' pain, so is often quite noticeable although if you don't use the correct 'terms' it can be bypassed.

    You don't have to have all of these symptoms but if you identify with one or some, muscle tension and nerve irritation could be a factor.

    The symptoms list could include stabbing, electric shock type pain, burning, itching (with no outward sign of irritation) hot and cold sensations, prickling, pins and needles and numbness.

    Hopefully you can say no to all of the above and rule nerve problems out It's often a process of elimination so I also hope that your up and coming results can shed some light too.

    Helen

  • It sounds very like trigger pain. This is a pain that originates a distance from where the symptoms occur following a nerve path.

    trigger pain originates in muscles tissue at a fibrous level. Muscles are made up of fibres lying next to each other and tightly packed. If some of these fibres get inflamed due to illness or damage, and conditions arise to trigger them (hence the name) the pain is felt in different areas. They can lie there for years without causing any trouble.

    I have one trigger pain spot under my ribs and towards the back on both sides, its difficult to find but when its found and I press on it, I get really intense pain like a knife going through me just in that spot. The pain I get from this manifests its self in nausea, extended period pain, dull aches in my pelvic area, kidney pain, abdominal cramps. Mine were triggered by hormonal changes in the cycle.

    Pressing and releasing is good therapy once it has been found, press until you cannot tolerate the pain and hold for a few seconds, release and repeat. eventually you should be able to press for longer and deeper. This does switch the pain message off short term.

    Drs are not always aware of or clued up about trigger pain. It does not respond to analgesia. My triggers were found by a physio who showed me what to do with them.

  • Hi, many thanks for all you advice. I am still waiting on the results from the hysteroscopy so will keep you posted.

    The info regarding trigger and nerve pain is so interesting. I have just poked around my rib area and found a spot that is very tender to the touch so will mention it to my doctor and see what he thinks. I will also mention the bloating that I get and see if I can have any allergy tests. Have also contacted my local swimming pool to find out their opening hours so hope to start swimming soon (am still bleeding from the hysteroscopy so can't swim at the moment).

    Thank you so much, its good to know I am not alone, the advice has made me feel a lot more positive. Will keep you posted xxx

  • Hi, it sounds as if there is more than one cause for your pain. One diagnosis could not really explain all your symptoms. It sounds as if you have IBS/bloating, but what is causing your pelvic pain- you may have endometriosis - you have not had a laparoscopy - endometriosis cannot be diagnosed by scans. You may be getting neuropathic pains or maybe have adhesions. please see this site for articles about pelvic pain and endometriosis.

    fibroidpain.org/pelvic-pain/

    good luck, don't give up. helen

  • Hi Helen, many thanks for your reply.

    I have a follow up appointment tomorrow in regards to my hysteroscopy. The results were all fine so he now wants to discuss my having a laparoscopy to look for endometriosis. I mentioned to my doctor about nerve and trigger pain and he has scheduled me to see a rhumatologist as he thinks that I may also have fibromyalgia which seems to fit with a lot of my symptoms. Will let you know how it goes.

    A huge thanks to everyones advice.

    Lucy x

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