Pelvic pain syndrome

Ive had pelvic pain for seven years it started when i was pregnant but i had to delivery baby at 18weeks due to losd of amniotic fluid wich also made me ill an infection in womb after.anyway ive tests camera loads different meds but docs still dont know twat it is.years ago they ruled out pid and endrometrosis.so they just calle it pelvic pain syndrome.it gets worse when im walking sbout for a while.when m stressed and angry.i used to find when i finsh drinkinh alchol for the night i would be in pain all night n next day.also gets worse when i haveva period wich nows cums when it feels like it.im do depressed with this its ruined my life my sex life my active life with my kids.ive aslo got an underactive thyriod and ibs. Im prone to uti s and also ovarian cysts not màssive ones.when in pain my pelvic area an stomach swell up so bad that i cnt wear clothes on my bottom half in the house.please sum one have any answers for me i cnt take anymore of this painful life

7 Replies

oldestnewest
  • Hello

    Sorry to hear you are in so much pain. There are a range of possibilities about your pain. Your pain could be from a single cause or multiple causes which many of us have. You've mentioned about alcohol making your pain last at least 48 hours which might suggest you have pain coming from your bladder. Have you have any tests in your bladder? A cystoscope would look inside your bladder to see if there are any signs of inflammation which would be suggestive of IC or painful bladder syndrome. This condition can cause abdominal swelling, also flare up during periods or when stressed. I have this condition myself, with endometriosis, adenomyosis and pelvic floor dysfunction so know how painful bladder pain can be. It might be worthwhile having it considered by your doctors.

    Often when we are in pain or have had pain in the past our muscles in the pelvis can become overly tight which can cause pain during sex, constant pain, pain worse on standing/walking. Luckily my case was picked up by the endo specialist but a good gp or women's health physio can also check for this. I see a women's physio weekly privately as the waiting lists on the nhs can be very long and it has made such a big difference to my life. I still get pain from the other medical conditions but I now have more days of no pain from the pelvic floor dysfunction itself. If this isn't the case a women's physio appt still might be a good option for you as they will consider other possibilities for your pain that might have been overlooked by your gp/doctors

    Another possible cause might be from pain memory. I can't think of a good explanation but if you google it there are some very good explanations there. This can be treated using medications that work on how the brain perceives the pain. These would include gabapentin, pregabalin, amitryptline to name a few. These medications are used very often in all chronic pain conditions and it's a case of getting the dose right or using a combination of drugs

    Have pelvic adhesions been considered that maybe both outside or inside the womb. Some very thin adhesions may cause minimal or no pain whilst dense adhesions can cause constant pain

    Sometimes no cause can be found and a diagnosis of pelvic pain syndrome is given. This can feel like a very frustrating situation to be in as we all like to know what has caused the pain and when none is found we can end up feeling disbelieved. This isn't the case but a completely understandable response. Again gabapentin and the drugs I've listed above are routinely used. Have you been referred to pain management? It might be worth asking your gp as your quality of life at the moment sounds as though it is suffering as you don't say whether you are on any medication at all for pain.

    Some other suggestions that I have had recommended to me or wanted to try and still use are:

    Mindfulness meditation - I use the headspace app which was recommended to me by my endo specialist and she uses herself

    Women's health physiotherapy - I know others who have been helped using this

    Gentle exercise which can seem impossible especially when in pain. I use yoga and Pilates. Even if it's just a few stretches it will all help

    Hot water bottles when at home or heat patches when out/at work. It does take The edge off and I personally find it to be quite soothing

    I take amitryptline as part of my pain management but also to help me sleep as I sleep very poorly. Poor quality sleep has a very negative effect on how we both feel and deal with pain. If we are well rested but in pain we can usually deal with it quite well, but the reverse is true with little sleep. I know this from personal experience

    Identifying anything that makes your pain levels increase. In some cases it might mean removing what it is from your life but in many circumstances it is a case of modifying the activity or doing it less often so it has minimal impact on your pain and lifestyle

    Stress reduction - can be from mindfulness and/or something you find relaxing for 5-10 minutes. Face mask, acupuncture? The choice is yours 😊

    If food or drink make your pain worse identifying which ones do this. I've seen a dietician to help with this for IC. It maybe that your IBS isn't as controlled as it could be in terms of pain so might be worth looking into either with your gp or a dietitian

    I hope this helps, if you need anything you can always message me privately if you prefer. I'm sure others on here have some suggestions or advice too. But please don't suffer in silence as you deserve to have help with your pain whatever the cause

  • thanks so much for taking the time for an extensive reply, which will be helpful to many of us. I also have received help from a women's physio and licensed massage therapist with extensive background treating chronic pain.

  • Hi there iv been on so many medications I have severe allergy to paracetamol and nsaids I go into aniphaltic shock.so I'm limited to wat I can take I've tried the amytriptine n gabapetin pregablin n many more I can't handle side affects and the all made more tired than already was.I have to young kids CNT be on meds that make me weirded out.I'm in thyroxine vesicare for bladder and meveberin for IBS and tramadol n dihyrdocodeine for chronic pelvic pain and so many antibiotics of the years.I've had tens machines too.the pain killers don't work like they used to as my body as became immune to them.I'm sick of popping pills I was told maybe a hysterectomy might be an option .but I dnt want that unless they r sure it will help.because I've had this for years I feel my gp just constantly given pain killers n nothing else to be done

  • Hi lainie8484

    I personally would be cautious of having a hysterectomy as you have a number of causes to your pelvic pain and simply removing the uterus when there is no evidence to suggest the pain is coming from there is very risky. It maybe that your bladder pain and IBS flare up during your period which contributes to your pain along with the ovarian cysts which I'm guessing are functional cysts and disappear on their own. Who recommended the hysterectomy to you?

    You also haven't said whether you've tried any dietary advice for these two conditions. The diet my friend was put on for IBS was based on the FODMAP diet and pioneered in Australia. It was so successful for her that she has gone on to train as a dietitian

    Like most of us with chronic pelvic pain it's a case of using a combination of treatments rather than focusing solely on one which unless you are extremely lucky is unlikely to work. So you might use the current medications you are on, TENS machine which I find works best if I use it for the day rather than just an hour. I use the pads on my back rather than the pelvic area as it makes the pain worse. Also meditation even just 10 minutes a day has been shown to be of benefit to people.

    Have you been referred to a pain clinic as they have more options available to them and a better understanding of pain than what most GPs have even if they are well meaning

  • Hi there ive been with a pain clinic for years.I'm in constant pain everyday.it gets worse if up upset or stressed too.the pain clinic have tried most of medications but my body can't handle severe side affects as I have two young kids to look after.I'm exhausted enough without the medications making Mme more drowsy.I've had trouble sleeping for years it doesn't matte how tired iam still CNT sleep I'm a bit of insomniac.the dics think I have nereve damage too .I get really down being in pain everyday day for the past 7 years.it all started with a medical termination at 18 weeks due to loss of aminotic fluid wixh caused infection to my womb.all my smears are always abnormale.recently they thought I had ovarian cancer as I had all the symptoms therefore I get a smear every three months

  • Hi lainie8484

    I'm just a little concerned that you are under the impression that smear tests will detect ovarian cancer. This simply isn't the case, it is used only to pick up cervical cancers or changes that could lead to cervical cancer if not treated/kept an eye on with further smear tests at more regular intervals.

    The symptoms of ovarian cancer do mirror those of more common conditions such as IBS. Are you sure your tests aren't to pick up on changes to cells in the cervix?

    As I said in my original post there are lots you can do to help yourself with chronic pelvic pain. This doesn't mean stopping the pain but in most cases reducing its impact on your day to day life, reducing the level of pain etc. Many of us on here have been living with it for many years and in some cases decades. I myself have been living with it for over 15 years from a combination of conditions. I haven't been able to take away the pain but use the methods I listed in my previous post and surgery. Pain is not an easy thing to live with whether acute or chronic. Have you been on a pain management programme? I'm currently waiting to go on a 6 week programme one day a week. It might be worth asking your consultant in the pain clinic

  • I'm so sorry! It sounds like adenomyosis to me. It's endometriosis in the uterine muscle. Hard to diagnose but one indicator is an enlarged uterus. It usually sets in during pregnancy as the uterus is enlarged. Very painful! 24/7 pain. I have it. You can also try going to pelvic floor therapy to help alleviate pain in pelvis. Adenomyosis only real treatment is hysterectomy.

You may also like...