Chronic pelvic pain syndrome

[gemd]

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

[Owenrach]

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

[gemd in reply to Owenrach]

In county durham using james cook hospital x

[cathyfongus61 in reply to gemd]

Hi there, if you are a male then it probably is CPPS, Chronic Pelvic Pain Syndrome, usually it is caused by prostatis inflammation and chronic congestion, if antibiotics does not work then you may try some natural therapies such as acupuncture, cupping, herbal treatment of diuretic and anti-inflammatory pill or water sitz bath, the herbs work for the pain as I know it.

[marybeex4]

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.

[gemd in reply to marybeex4]

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

[mjacobsen]

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

[Jan102 in reply to mjacobsen]

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

[Mabes]

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.

[gemd in reply to Mabes]

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

[Sadielee1608]

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

[mrsbaldera]

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

[mrsbaldera]

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.

[gemd]

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

[McGraw in reply to gemd]

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

[ljlmax]

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.

[suebest58]

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

[glenbanchor]

About to try " Emucare" cream to hopefully stop vaginal pain. Try anything once to stop burning sensation.

[brycesara]

Hello Everyone,

It has been quite some time that I have been on here, my husband Bryce was suffering from a fissure for 2 months, and Praise be to God it healed! So grateful to God for that. He was still in pain and having spasms up furter in his rectum so he had his internal hemmoroids treated with Infared Heat Coagulation which the procedure is painless but the scope was a 15mm and since his internal schinter was still tight, it tore another fissure in another area. He became suicidal from the terrible and persistent pain and I kept searching online for other answers. Thankful to God for this forum and for all of you sharing your experiences and healings. From these forums I decided to call a Pelvic floor PT and she told me about the book Headache in the Pelvis by Dr. Anderson & Dr. Wise. I ordered the book and read some of it and discovered that probably a lot of my husbands pain was coming from more muscle/nerve related pain along with the anxiety/depression/insomnia he was suffering from the pain. It becomes a viscious cycle. I decided to try to call Dr. Wise since his number was in the book. To my surprise he answered the phone and he is such a great person and doctor to talk to on the phone. He said he could not advise us since he is not our doctor but he told us what he normally recommends to his patients.

1. 1% Nefidipine ointment in a neutral base (no lidocaine - can be irritating to the tissue) and diltizem can be irritating to the tissue. Apply a toothpaste size amount 3x a day if possible with finger but if not with applicator

2. Hot baths which we all know relaxes the muscle by 1/3 (3 x day)

3. Ketamine Infusions for pain

I immediately searched for ketamine places and found one in our area - Pittsburgh Ketamine in White Oak, PA, Dr. Macler. They were able to get Bryce in within a week, and we were so thankful to God to have hope again. We truly believe that God intervened and put these people in our paths, and we thank God for the chemicals that he gave people the wisdom of making and helping people. We believe it all comes from God, and Jesus Christ His Son, Our Lord & Saviour.

After the very first 4 hour ketamine infusion treatment on March 6, 2020 Bryce went from not even being able to ride in vehicle laying down without tremendous pain to driving the same vehicle the very next day. He still had some post bowel movement pain, and spasm high in the rectum, so the doctor prescribed his .1 mg clonidine for protagia flugax 2 x day and oral sublingual ketamine 20 mg 2 x day. He was also already on valium 5 mg 2x day for anxiety and to help relax the muscles. And another doctor prescribed doxepin 25 mg before bed for sleep. This really helped him with sleep after about 1 week, the valium helped with the anxiety. The same type of pain even with an active fissure. Because Bryce had active fissure pain prior to the first ketamine infusion and the next day that pain was gone. Praise be to God, Glory to God! We give God all the Glory! Bryce had another infusion 5 days later with even more improvement as ketamine also helps with depression/anxiety and suicical thoughts. Then he had another 6 days later and had 95% improvement. He had a relapse of pain and high rectal spasm 3 days later and was not able to get another infusion due to the corona virus, the one in Pittsburgh shut down. The relapse lasted a few days and he did have improvement each day but still was having some post bowel movement pain and pain throughout the day with activities. So I talked to a ketamine place in Clevland Ohio and she told me they could not get the ketamine in right away due to the virus so she suggested to call a neurologist so I did. He prescribed gabapentin 300 mg 1 x day before bed and increasing to 600 mg and then if needed 900 mg. Bryce started the gabapentin 300 mg 7 days ago and Praise be to God and we give God all the Glory he has had improvement with post bowel movement pain! Also he is using the 1% nefidipine ointment 3 x day, and 2 other ointments prescribed were the first one all of these: 6% gabapentin, 5% ketamine, 3% amitrypiline, 2% tetracaine. and the other is 3% amitrypiline. These all help with both tissue and nerve/neuropathical pain. Just wanted to pass along what has with the God's healing touch helped Bryce. He is now taking 5 mg valium usually just 1 x day, 300 mg gabapentin night + 150 mg gabapentin morning, .1 mg clonidine 1 x day, 2 - GNC Tri-Sleep product at night, 20-40 mg ketamine sublingual per day.

Pray that God will bless you all and bring all His Angels down to touch each and every one of you suffereing and please pass this on to everyone. God be with you all, with Love in the name of Our Lord & Saviour Jesus Christ,

Bryce & Sara

[Cwilson2280]

I’d recommend finding a women’s health physical therapist who specializes in pelvic floor therapy. That’s what I have found the most relief with coupled with using a tens unit on a regular basis.