Here is an area to discuss and relate to Spiritual matters....share a thought, happy moment, cry on a shoulder, offer some faith to those in need. This area will not be viewable to non registered users.
I completely understand where you are coming from on this Julia. I am trying to hold down a new job and I am so jealous of the healthly women my age who are sitting, getting married, and having babies.
However, like Lernica, I can also see the positive in this condition. I was recently engaged to someone who was probably not right for me. He wanted me to move across the country far away from my friends, family, and professional connections. While I was in the process of doing that, he broke up with me because of PN. The very next day, a guy friend, someone I went to law school with and knew all about my struggle with PN, told me that he loved me and wanted to be with me. He thinks I am perfect just the way I am and wants to help me fight towards wellness. And so far, he has. I found this job in the filed that I love, that I never would have found if I had moved for my fiance, the week after. When I'm down, I try to remind myself that if it weren't for PN, I would be struggling to study for the Texas bar exam, forcing myself into a marriage that wasn't right, and moving away from everyone I love.
The world works in mysterious ways. That said, I am ready for the healing to begin.
Good luck and hang in there. It's tempting to think that life would be perfect without PN, but it wouldn't/won't be.
Started with vulva itching 2/11. Diagnosed as vulvodynia and then PN in 01/12. Progressed to sitting pain and constant burning. Received 4 nerve blocks with only temporary relief, did year of pelvic PT before being diagnosed with bilateral FAI and hip labral tears 7/12. Did orthopedic PT 1.5 years. 3/13 Arthroscopic hip surgery at HSS with Dr. Kelly. Take cymbalta and lyrica daily. About 97% better than worst point thanks to combo of surgery and meds. Yay!
Love your story Jax Think I can see a movie in there. Who do you want to play you?
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Just saw your post......I have been to similar low points so many times throughout my PN journey where I didn't think I could take another day. Like yourself I went alone to medical appointments...I was frightened and in agonizing pain feeling like the saddest person on earth. The only place I feel "normal" is here on this forum.
Having the HOPE website to turn to has made all the difference. I no longer feel alone in the waiting rooms....I carry HOPE in my heart. The strength of strangers saved me, miraculous I think. As you know there is an amazing community here to compliment your healthy relatives/friends and as the others have said, we completely understand where you are coming from. Right after posting this I am sending you my phone number via personal message, please don't ever hesitate to call and vent and I promise not to cry louder than you.
My co-workers make similar comments as yours. Even though I'm down to only 3 or 4 hrs. per week these days I am determined not to give up that last piece of my former life and, ironically, I work in the fitness industry so I am surrounded by incredibly fit people. That's just so wrong! I lost over 25 lbs that first year following my injury and everyone told me how great I looked!! But after a mere 3 hours some days I cling to the hallway walls struggling to make it back to my vehicle to head back home. I swear I will crawl there and back if that's what it takes.
Like yourself I've been enduring a massive flare for the past week after trying a "gentle" pelvic floor therapy appt. with a trusted and skilled therapist. I was prepared for a flare but not this level that is not showing signs of letting up yet. My hope today is perched high on a mountaintop and I feel like an ant looking up at it....but I've been here before looking skywards for that ladder upwards that is tethered by the HOPE community.
Your "jealousy" of others is perfectly normal under these circumstances, a symptom of grieving the loss of former abilities and pleasures. But you are right, the loss of something is ALWAYS the doorway to a new beginning if we keep our hearts open to receive, you have lots of courage and determination to have gotten you this far........Sending you hugs......Stay strong.
Fall Girl
I feel the same way. I completely understand and am dealing with this myself. I would LOVE to be healthy again. To be able to drive, sit, be intimate with my spouse like we used to, take my kids places.....oh that would be the life! I miss it terribly and its very hard seeing healthy woman live normal lives, while I feel so abnormal. I hope we all get better! I am sorry you are having such a hard time. It has to get better, right!
Thank you for sharing that you feel this way too. I would never wish this on anyone, but it is nice to know that I am not alone.
I see that you are fairly new to the site and I just wanted to suggest that you do whatever you need to do to get your pain under control, and then explore long-term treatment options. I tried for so long to stay off meds because I wanted to go the natural route, but looking back now at the pain I was in, I cannot believe I endured it. I thought taking meds was somehow "giving in", because they cannot offer a cure, but truly when I go on the amitriptyline I was able to regain some of my normal life and this was so so important. Amitriptyline worked for me, others respond well to Cymbalta or Lyrica. You may have to experiment at first to see what works for you, but you deserve some pain relief! Message me anytime if you have any questions! Praying you find some answers soon!
Julia (Toronto) 31, female
Chronic pain since '09. Current symptoms: burning pain at left ischium when sitting, pelvic floor heaviness/tightness, cannot sleep on left side, pressure on bladder, pain worse with sitting/lifting anything heavy/pulling open doors, unable to wear tight pants, pain is intermittent; sometimes a dull ache, other times burning/pulling/pinching. Amitriptyline and ice helps. Diagnosed with labral hip tear 2014, considering surgery.
Hi folks,
I just noticed this is an older thread, but came on today looking for someone "to talk to". When I saw the topic I was drawn to it.
First, Im so glad, Julia, that you sounded much better in the last post ,and I'm hoping your meds gave you the relieve you so needed. and hope you are well these days.
I feel just the way you folks do ,and envy those who can just jump in their car,run errands and drive anywhere they please!. I wish I had been more grateful for how lucky I was before these issues struck.
If things were back to normal, I would be sitting on a beach chair right now, enjoying the late summer warm water temps and making the hour long trip to our beach to meet my sister there. Now that our kids are older, I would be able to do so. Like my other relatives she does not "get" my disorder, but our love of the beach and ocean is something we share. Oh how I envy her I for being able to do the above, and for being able to work at a job where she gets kudos for her accomplishments like I remember from pre-mom days when I working.
I feel like people can't see how lucky they are just to feel comfortable in their bodies. So I have that jealous feeling as well.
I realized awhile back that I have very tight muscles , which are the culprit in my pain ----pelvic floor dysfunction.
Several docs and PTs whom I saw agreed. I had various meds ans treatments; some meds tightened my pelvic floor even more, so I couldn't use them.
Thankfully this past fall I met a PT (after seeing several others over the years) , with whom I finally made some progress... however slow.
She had to take off for maternity leave, and a surgery, so there have been a few breaks in care.
When I can't see her, I feel lost as she is the only one who 'gets' it. Over the past several months, she got me to the point where I could add various foods / beverages back into my diet(even some white wines) without angrying my bladder.. I have been able to drive again, locally tho with after pain, which thankfully fades back to baseline in awhile.
However lately I'm flaring again, bladder-wise and have bowel issues which are a newer symptom (from other posts) Both are from tightness!
Today and tonight were stressful and my bladder issues are flaring. (I had a glass of wine and tonight it bothered my bladder! big-time!)
Having a glass of wine in a restaurant does relax my muscles , so that I can kneel/sit on a cushion to dine out. The fact the wine relaxes me further proves how tightly wound I am, and how relaxation lets the muscles relax and numbs the pain.And once the glass of wine wears off I don't have the after - pain I usually do with activity.Tonight I have bladder urge pain, but I again I has a stressful day and evening.
Pls understand however, I do NOT advocate drinking alcohol. I just noted in my case that one little glass of wine helps me to sit/ kneel etc
when strong opiates in my pain pump don't do much!)
My PT's mantra for me is "be normal --live your life!! When I ask about activity, I agree with her that,... with my worrying personality and years of being stuck inside, activity is my best medicine.
Driving hurts badly (with cushions etc) but I tend to bounce back to baseline much faster than a year ago when I wouldn't have dreamed of trying to drive .My urinary issues got a little better with her PT work , so I then added in some foods that I'd given up, and gained back a much needed 15 lbs, and finally look healthy., thankfully.
Yet my anal pain is brutal still. My PT feels that tho ii will take time (lots), we will get there. I trust her as I can tell how savvy she is by both her knowledge and my progress. I have self Pt exercises ..however sometimes I am too flared to do them and flare myself more.
I may be digressing but I just want life to go back to normal!
About my family , they are so used to my being in pain... well to them it almost is 'normal'. My kids who are teen-aged and in early 20's sometimes close their doors when they hear me cry in pain!
Yet on the positive side, my sons are warm, affectionate boys, and sometimes just hold me when I cry.
They are all good kids, yet I know how it must hurt them to see their Mom cry.
I pray that my 15 year old daughter will have a "whole'" Mom one day soon who can help out with driving she and her friends to their social and sporting events. I envy the other moms tho I want to join them and do my part.
My hubby on the other hand, tho a good man, whom I don't think will leave me, shows NO sympathy for my pain. He made it clear awhile ago that I was to stop talking about it! I did stop, but even now he gives me the unspoken impression that I am selfish, and that I should just stop thinking about the pain. Oh How I wish I could!
Also anxiety runs in my family.. My hubby has never had that either, so he considers that folks with anxiety should just "get over it"..
Believe me we do the best we can. I feel I've done a good jog of coping with unspeakable pain, without any acknowledgement/praise from hubby.
I know that he is suffering too, but I also feel he resents that he has to cook dinner after a day of working, as my pain is high at that point in the day. He also has to drive to my daughter around. He hates shopping, so I either order online, or do some local driving.
We often order out.
In protest he leaves the food out, dirty dishes, pots etc.for me to take care of.
Our marriage has suffered greatly, He treats me with no respect,not as an intelligent woman. His attitude is kind and normal with the kids as it should be, but not with me.
Tonight at a restaurant, he and my daughter were talking about a topic. I tried to jump in and was ignored. I commented on feeling left out,and not a part of things. He proceeded to lecture me in front of our 15 year old daughter about interrupting them. He spoke to me like I was 12. Granted I did jump into the conversation ..maybe wrong,... I just wanted to be included. I should add that I often feel left out and not a part of things. It's annoying to him when I have to bring ice and my various cushions on family outings, so I can't just jump up and go at a moments notice.
I am still a good mom, as I always have been. When they are not feeling well or upset,they come to me ..I do all I can for them, comfort them as any Mom would.
Hubby, is a laid back, but stoic type..with situations.
Sorrry to digress, but living with chronic pain doesn't make you any less of the person you are. I have a pain pump--
the meds can make me scattered at times ... a symptom my nurse says is normal.Its not big deal but it also annoys the heck out of my husband. He expects me to be able to act at all times as if I was not in awful pain!
I don't know what to do..
This has worsened so much recently that I'm considering a separation ..I know this is a bad time to make rash moves, but I'm beginning to think maybe hubby is the reason my anal pain persists.. I'm angry at how he treats me as described, so maybe I clench more.
I'm upset that he spends all of his free time lying in his recliner in his basement mancave reading, watching TV etc.
Sure I'm jealous that I cant sit in that recliner too, But I'm much more hurt that I haven't gotten a bit of praise for the accomplishments I have made and how hard I try to smile for the kids.
Thankfully as said my sons have been warm ... my daughter is a young teen and just needs Mom to be normal, not upset.
I have 3 happy kids who love their home, their pool ,and neighborhood and friends . I don' want to upset their lives.
But I can't being treated this way any more. I can't talk to my hubby about this as he will blow up and say it's all my fault. It would be a bad scene. i am thinking of writing a letter and expressing my feelings, but must be careful not to be accusatory, as he does not respond well to criticism. He won't go to marriage counseling...he is conservative and private, and does not like talking about feelings.
i have talked to a counselor about the pain issues for 3 years, but it has not helped..She is the best counselor I've met, but has not even touched upon cognitive behavioral therapy which could help with my fear and anxiety; not a long term thing, like some other methods.
Anyone have any advice ? I know this is a tough and personal issue but I' very scared.. and wondering if I might actually feel better if I took a break from my spouse? I am going to talk to a family member (who is an attorney about my rights)
Thanks for any advice. and sorry for digressing!
Im thankful to have you folks to talk to.
Think I can see a movie in there. Who do you want to play you? 
I lost over 25 lbs that first year following my injury and everyone told me how great I looked!! But after a mere 3 hours some days I cling to the hallway walls struggling to make it back to my vehicle to head back home. I swear I will crawl there and back if that's what it takes.