no endo found but adhesions - chronic pelvic and back pain - help!

[shellb87]

Hi

I am hoping there is someone out there who is having similar issues to me (obviously dont wish it on anyone) but struggling to make sense of my laparoscopy results. Let me start at the beginning:

For about half a year now I have been struggling with pelvic pain. Sometimes its sharp breath taking twinges but most of the time its period like pain (but worse than my normal pains I used to feel). I feel it in my back as well. Symptoms have been lasting as long as 20 days out of the month and I have been struggling to work as I feel so tired and exhausted from these pains. They are agonising. I also wake in the night sometimes and need to go to the toilet - sometimes when I have urinated I get crippling pain that only goes away after ten mins and when I apply a heat pack. Safe to say I am struggling to cope with the pain and with working whilst in pain. I also dont socialise much anymore as often feel too exhausted and going anywhere where I might have to stand for long periods of time is a no no!

I had a laparoscopy on friday and no endo was found which puzzled the surgeon as he thought it was endo. He did say he found some adhesions that were similar to someone who would have had a cesarian (I have never had a child nor been pregnant). He did not think these adhesions were the main source of the pain but removed them anyway. The adhesions were located on the uterus down by my bladder. He found no cysts or endo anywhere else. Although I didnt ask where he looked - from the photos he showed it was mainly at my uterus and the ovaries not at surrounding organs or hidden areas.

I was too out of it to ask where he had checked (if he checked the pouch of douglas and other areas endo might hide). Now I just feel confused because I've been in so much pain it cant just be for no reason. I'm really scared the pain is going to come back as well. Its so debilitating.

I'm hoping someone can advise if they have had a similar experience and what I can ask the consultant in the follow up appointment?

Thanks

[PPSN_JudyB Pelvic Pain Support Netwo]

Hi,

You could ask him about the POD and other areas it can hide including the bladder. It can affect the bladder and he wouldn't be able to see that necessarily. If the pain continues you could ask seeing a pain specialist and you may want to purse having an MRI if things don't improve.

Let us know how you get on

[sharelle]

Hi, has the op helped? I have the same symptoms and whilst Googling I came across Pelvic Congestive Syndrome (or something like that) and all the symptoms match mine, but it is only diagnosed by a specific test. Look it up and ask about it at your next appointment, I know I will be when my appointment eventually comes through. Keep me posted.

[shellb87 in reply to sharelle]

Thanks. I can't tell if the pelvic pains I'm getting are post op as the operation was less than a week ago. I'm getting the usual back pains so my fear is the pains have returned less than a week post op! I will ask about pelvic congestion. Thanks again it's helpful to know there's people out there in the same situation. Take care

[Hopeful15]

Oh sweetheart. I feel your pain. I understand completely. My uterine adhesions were caused by surgery last year and a Laparoscopy in March solved half of issues at front where my womb and intestines had adhered to abdominal wall but the other half at back - uterus to large and lower bowell couldn't be touched because it was too dangerous. In my case the biggest thing has been coming to terms with a new body with new limitations. I struggled on trying to pretend I was the same person I was before the pain started, in hindsight, quite literally hurling myself at a brick wall over and over again. Everything started to break - my will, my self confidence, my marriage, my mind. It took the threat of divorce and my boss stepping in, taking my laptop and phone away from me and marching me out of building with the demand I get myself signed off of work for at least a month for me to hit rock bottom and realise I had to shift my perspective on what was happening to me to be able to save my life. My consultant agreed with everyone else that I needed to rest. Completely. I mean it - for a month...nothing more than v light chores, cooking (I'm a whizz in kitchen now) and a gentle stroll once a day ensuring I was home before pain started - even if it only meant 5 minutes outside. Swimming was also helpful. He also recommended accupuncture - which is fantastic for energy levels, pain and perspective. Besides this I was advised by someone close to learn how to meditate and do self hypnotherapy to deal with pain and new situation. Stress causes A LOT of the pain associated with these adhesions because they are your core. The more you tense the worse the pain. Once I'd rested and we were able to measure that increase in activity = increase in pain and my consultant was able to confirm that the pain was chronic. I took legal advice and HR advice and discovered that this meant that in law my employer had to help me make reasonable adjustments to my employment to enable me to work in less discomfort. They've been great. My role and responsibilities have been adapted over a designed return to work plan. Things like your chair, foot rest, being excused from meetings in board room that run over 1.5 hours so that I can stretch and move, a laptop trolley, reduced hours that build up slowly over weeks to enable me to measure progress. It's hard at times - feeling like the disabled female in the office, swallowing my pride as I see other people run successfuly with my workload and I admit it's hard to swallow some days and I have a little cry in the bathroom. But on the other hand it's giving time to adjust and get used to things. A lot of it is brain training. Instead of thinking about what I used to be able to do, I have to learn to celebrate what I can achieve. It's a subtle difference but has an amazing effect on how you cope going forward. Over time my prognosis is that my brain and nerve receptors should start to turn off the pain or at least stop sending my brain the panic message that something is wrong - the one that makes you want to curl up in a ball and cry about how crap everything is. I have those days, but they are fewer now. I'm sorry I can't give you the cure but I promise that the above does help and over time you can train yourself to accept the new you and be happy again. If you need any further info on any or all of the above, please DM and I'll be happy to help. Good Luck my dear. If it's any consolation they told me that they could cure me with a hysterectomy......and instead I refused, underwent the above and found out I was pregnant after 10 years trying. The universe, my body and my mind obviously wanted to tell me something important about the road I was on before. Sometimes it takes something like this to show you the way. Good Luck and Chin Up. You'll be just fine. Promise.

[Hopeful15]

Oh and on social front - this one is really important - you MUST continue to socialise - you just need to adapt the way you do it. I held dinner parties at my house or cooked at friends houses - so I could wear my pj's and lay on a sofa or bed when needed. Don't stop seeing your friends - you need them more than ever now.

And if you have a partner, don't stop being intimate. It's embarrassing but an amazing journey in communication for both of you to find an alternative that works rather than to give up. These are the most important things - your spirit and your loved ones.

[gailkenny]

You would likely benefit from physical therapy for pelvic floor and hips, thighs, buttocks, etc. Trigger point therapy really worked for me combined with mind-body practices to reduce stress. It's likely some of your pain is from sore spots in your muscles. If you are in England, Maria Elliot is a great physical therapist to see.