Chronic pelvic pain

[Anabelle101]

Need a bit of support and to see if there were others out there. I have had five operations, including three laparotomies for pelvic, ovarian and tubo ovarian abscesses. Last episode was awful and I ended up in critical care. Now instead of more surgery - which would be a hysterectomy but I'm only 25 with no children, so I am going to pain management clinic. Does anyone know what I should expect? Is it just one quick appointment? Have people found them helpful? 

[Hidden]

My first appointment at the pain clinic involved talking through my history and symptoms.  I then had an examination.  We discussed medication and made a sort of treatment plan as to what tests to have done with the gynae and colorectal consultants I was seeing at the time.  I was introduced to a nurse who would follow up with me.  I was also referred to their pain psychologist for a few sessions.  They will advise your GP what medications to try. O have pudendal nerve pain which is very different to your pain. After all my other tests the pain consultant did a nerve block which aggravated the pain, so I rely on medication now.  Maybe they won't examine you, I don't think they would do a gynae exam.  Some people on here have done pain management courses at other pain clinics.   It sounds like you have been through an awful lot for such a young age.  I really hope the pain clinic can help you manage the pain day to day. Take care

[Anabelle101 in reply to Hidden]

Thank-you for you message sueboo it's taking a while to be referred so I'm going to have some private treatment. It's good to know someone is going to do a follow up not just give me drugs and leave me hoping they might work. I've lost my job and self confidence so hopefully I get some help soon. 

[Hidden in reply to Anabelle101]

I'm sure they will help you.  One lesson it took me a long time to 'get my head around' is that the bottom line is self management.  Hopefully they will give you the tools to help you do that.  I manage my pain day to day with medication.  I can vary the level of painkillers I take depending on the pain.  I have an upper limit of course, I need help if I'm still in pain then (not happened yet), but on the better days I take less which is also important.  I'm also waiting for another pain clinic appointment regarding nerve blocks, it's an ongoing process. 

[Desperateforrelief in reply to Hidden]

I used to be able to do that. I am in a new pain clinic and they are requiring me to take the same exact dose every day. They changed it from the same time to allow some flexibility. But I have to take it even if I don't need it?

[Hidden in reply to Desperateforrelief]

I take a maintenance dose (minimum dose) each day but can add when necessary. There is merit in taking it regularly, but it can't be good to take a high dose if you don't need it.  Save the higher dose for the flare days when you need it! 

[Desperateforrelief]

Wish I could. But I am required to take this exact same dose each day. If they raise the dose I have to take the raised dose each day.

[Hidden in reply to Desperateforrelief]

Prescribed pain meds aren't, obviously, the same as taking various doses of aspirin. If you have established a blood level at a certain dose, you don't want to vary too much. But your clinic MIGHT be open to the idea of a "Rescue Dose" or med when you have a flare up or know in advance you have an unusual circumstance, such as dental surgery.

[Desperateforrelief in reply to Hidden]

This place will not allow it. I have I asked for that. He says that it will cause me too much withdrawal issues. I'very just been with them a few months. It is driving me crazy

So my pain gets out of control at times and other times I feel over medicated. I hate that feeling. He also says there is no such thing as a flare up or break through pain. I drive over 2 hours to see him. No one else will take me. My pain goes from a 2 to a 9 in a few minutes at times. I have pudendal and obturator neralgia.

[Hidden in reply to Desperateforrelief]

You are describing a common "double-bind" situation in pain management. It's not like choosing a dentist. Patients are stereotyped and have to comply with lots of rules. But one thing is eventually guaranteed with life: something will change, either for the better or worse So maybe for now, you do the best you can to adapt, but keep watch for an alternative. 

[Desperateforrelief in reply to Hidden]

Thank you for your reply. I agree. Do the best we can with what we have and work up from there.

[Anabelle101]

Thanks sueboo I wouldn't mind self management. At the moment I can't get any relief tried reading some self help exercises on the Internet but think I need some hospital advice on how to do them right. Desperateforrelief I hope you find the right dosage for you soon. I really hope my appointment comes through soon!!

[Hidden]

I have had pelvic pain since 2005 and subsequent surgeries. Some pain clinics are just going through the motions, but occasionally you will find a provider who has skill and really cares. Sometimes it's not the MD, but a nurse practitioner or case manager or psychotherapist. The 12-Step approach of "One Day at at Time" helps me avoid anticipatory anxiety, "How will I survive the next decade?" Besides having children, there is also the question of gravity and pelvic floor dropping after hysterectomy. That is how some of us ended up with pelvic pain.

[Anabelle101]

Thanks lorna I didn't think about the effects of having a hysterectomy. I always wanted to have children but if it's a case of that or being alive it's not really a choice. I think I'm excited of the thought of moving my life on from where I am now.  I've just lost my job because of the last surgery so seeing what comes my way.

[downtowntiger]

The first pain doc I saw ran a $10,000 tox screen! I complained and I was told not to worry about it...never got billed again. He also didn't prescribe pain meds-so I hope yours is different.

[Anabelle101 in reply to downtowntiger]

Oh no....it's stories like this that make me thankful to have the nhs! I can't even begin to imagen how much my last hospital stay would have cost me.