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Pelvic Pain Support Network
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Chronic pelvic pain syndrome

I am new to this group and been suffering from chronic pain for 4 years now my pain management team say its chronic pelvic pain syndrome can any one please give me advice on this I have been given a tens machine to try could it work ? Has anyone tried one to help thank you x

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You need physiotherapy rather than just pain relief. The NHS often don't recognise this. Where are you based ?

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In county durham using james cook hospital x

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Have you actually been told what is causing the chronic pain? I too started in a pain clinic and went round and round in circles seeing various doctors and consultants. I found that I was not really listened to as each person had knowledge of a specific area in the body but no one seemed to know about the whole area in the pelvis. I had dreadful pain issues and began to despair until I found this site. I listened to other people with various problems in the pelvic area and through them found better better medical sites to get better informed. I was then able to talk to my doctor with more understanding and was better able to explain the actual area of pain. As a result I was at least able to get better medication to help reduce the pain.

I had actually found this site after going full circle and ending up back in a pain clinic where I the consultant suggested to me I should not research possible problems as I may be talking myself into a pain condition and maybe just learn to live with the pain. I was so upset with her comments, having paced the floor all night until four in the morning, not knowing what to do as the pain was so bad,I was exhausted, weepy and frustrated all at the same time.

This site kept me going just by fellow pain sufferers being kind, supportive and also informative. I feel much more in control of myself now - i have the better medication, I have appointments in hand to see further consultants who have said they can possibly help me and i am feeling more positive. Try any thing that may help - its all worth a go and keep learning because at the end of the day its up to you how much you push to get the help you so badly need. Good luck with the tens machine. give it a go and let us know if it works for you. Share the info and it may help someone else here.

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Thank you for your support I have suffered on my own for 4 years now I am ao glad I found this group x

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I'm one of those rare male cases. I've had it for 10 years. My hot tub has helped and occasional soma. When it gets really bad I have a great therapist that massages the muscle tissues just inside of my anus. That has helped a lot. You have to get over being self conscious about it. Only people who know how to treat pelvic pan pain or those who have it, understand

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Hi

I am also a male, and suffered from the pelvic pain for 20 years. But it is not getting any better.

I would be interested to know how you have dealt with it. Also, could you pls let me know where your therapist is based? BTW I am in London.

Thank you

Jan102

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I use a TENS - I suffer with chronic pelvic pain due to endometriosis and a fibroid. I find it helpful, but it is only a small part of the bigger picture. The TENS is more of an additional tool or top up to trying to relieve the pain and I still need to take painkillers.

I find it does really help if I use it over my bladder - I had an area of endometriosis there, recently excised during surgery. It seems to confuse my brain and instead of focusing on the bladder pain, my brain focuses on the sensation of the TENS. The other area it has helped me with is my lower back.

I think it is worth a try. I agree with the others in terms of finding out what exactly is causing your pelvic pain - as in doing so you could possibly, depending upon what's wtong, even more targeted help such as surgery, physio, and non painkiller based pharmaceutical options.

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I have only ever had basic pain meds paracetamol and naproxen I am waiting on new machine sorry forgot tp mention had 4 laparoscopys andonly adhesions found app they are not the cause of the pain alao had a clear mri scan x

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My TENs has helped me no end, hope you get some relief x

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I have not given that a try but have you tried any injections?

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You should see if the Doctors will try different injections to alleviate some pain. It has taken a lot of miss and and fails but I think we have finally got the right combination and maybe a diagnosis with my last injection.

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I have tries prostrap and zolodex injections with little help painful intercouse is also a big issue for me n my partner I am so grateful for all the comments and replies thank you x

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Hi Gema i am a suffer of chronic pelvic had it over 30, years very long story!! you say that you suffer with painful sex is it during sex or after you get your pain. l get mine about a day after sex or anything like walking or anything that is excessive.

l am under the pain management in London with a lidocaine infusion every 4,month & pregabalin paracetamol every 4,hrs a day. this pain has taken my life!!! cant have any antidepressants due to 2, heart sents from two heart attack. AS you can guess so not interested in making love to my husband as its to painful.I am so so tied of talking to Drs about it they just don't understand what you go through have been to see 10, different Drs had three surgery's had a hysterectomy in my thirties which they said i would be like a new women i am now sixty! still trying to cope with it all. Sorry for the rant my husband has just had major surgery for bowel cancer so life sucks at mo! Carol

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I have suffered with chronic pelvic pain for 8 years. I have horrific nerve pain due to nerve damage after surgery in 2007. A tens would not work in the area where I have the pain, yet if you think it would help, give it a try. I used it for many months when I had problems with my feet. I am on many medications to manage the pain, yet the flares are very difficult. I am actually thinking about getting a spinal inter-stimulator. It works on the concept of the tens unit.

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Hi, i've been i chronic pain in my right right hip, and my pelvis for 3 years now, went for a cortisone injection on monday and it has made my condition worse than it was before. l do not recommend having it done. Sue best

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