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**baaaby11** · 12-22-2010, 01:42 AM

First of all, you said you want to be strong but it sounds like you already are. The fact that you have still been able to work through everything and still stay focused on your education is AMAZING. I'm sorry that your advisor doesn't understand. Unfortnately, not everyone will. If it takes you a little longer than 5 years to graduate, it won't make or break your future career. Who cares if it takes you a little longer? What matters is that you're willing to keep with it no matter what.

I've read a lot of posts on here where people have had really good results with PT. Just stick with it! I've heard that sometimes it's rough the first few times until your body gets used to it.

You didn't mention whether or not you've tried the IC diet? In the beginning, I was popping AZO left and right and also following the diet. It took about a month to even realize that the diet was helping but I realized that it was deinitely helping.

I'm a 24 year old graphic design senior at a University so while my major isn't as smart as yours (lololol), I defintely understand where you're coming from. PM me anytime you want to talk. <3

**klite** · 12-22-2010, 04:08 AM

Hi Erin,

I'm sorry to read that you are having such a difficult time with managing your pain alongside of your intensive studies. I can definitely relate -- I just finished my PhD and there were so many trying times, I wasn't always confident that I would be able to finish.

The first thing that struck me about your post is your age -- you are still so young at 24. It totally sucks that you are suffering so much. I think that it is unfair for anyone to expect you to finish PhD studies at your age. I'm 31 and that is about the norm age for people finishing grad. school in my area (literature) and in Canada across disciplines. Have you considered taking a leave of absence for a year? Is that a possibility (I know that funding issues are always a concern)? It might be something you want to look into though. While I never took a leave myself (I was lucky to be an RA for several years which meant I could work on my own time largely), I know 3 people who did because of health reasons and they are now finishing or finished their programs with no problems.

Also, is it possible for you to change supervisors? I changed my supervisor in my 3rd year of the PhD (I took 5 all together to finish) and it was one of the best decisions I could have made. I was also very up front with my entire supervisory committee about my IC pain issues -- when I defended, I had a terrible bladder infection actually, and everyone was super accommodating in making sure there were bathroom breaks. In fact, we all went together as a sign of solidarity!

Finding a faculty member who is sympathetic and understanding might really help you cope mentally with the stress. Even if you are stuck with your supervisor, maybe there is another prof that you've always gotten along with and could be your mentor. There was one lady in particular that got me through the darkest and most painful times of grad school -- she was always a person first and academic second. Just having her "in my corner" was a huge help.

I also can relate to your feelings of isolation and depression. I was sick for an entire year (lots of bad stuff happening, IC rearing its ugly head, etc) and wasn't able to go out to departmental parties or any of the many social events that are part of grad school. No one called me or came to see if I was alright. I went from feeling like I was part of this large supportive community to realizing that I had 4 people who were actually my friends (and not just "friends-because-we-are-in-the-same-place"). I NEVER again felt part of the academic community after that. That was my second year -- even though I felt displaced and isolated, it did give me the courage to change my supervisor and thesis project. I made the decision to make grad school work for me on my own terms ... which meant a less marketable project, a new supervisor, and the decision to leave academia when I was done.

This is a super long reply, but I felt compelled to let you know that you are not alone. Grad school is stressful, but it has an end. Remember that the "5 year" finish date is just the "norm." Lots of people take way longer. Stick to the IC diet, check out counseling (I did), don't worry about what your lab mates are up to, and get a ring-cushion (or one of the ones sold in the ICN Shop) for sitting on while at your computer.

Good luck. You are strong, apparently whip-smart at 24, and you will be able to rock out that PhD.

***ICNDonna*** · 12-22-2010, 04:10 AM

Physical therapy can take several weeks to help. You are carrying a heavy load right now, but you have already shown you can do it.

Sending encouraging hugs,
Donna

**ermkenne** · 12-22-2010, 09:33 AM

Thank you everyone. I really appreciate all of your kind words.

The odd thing is that in the beginning my advisor was very supportive about everything. This all just came about this semester. He expressed concerns because of physical therapy appointments, doctors appointments and my times of pain. He believed that would hamper me graduating on time. I sent him an email letting him know that I am going through a tough time, but I am determined to do this.

I am currently on a fellowship (GK-12), where I work in a high school a few days a week and mentor students, teach them about research, and basically get them interested in science. The teacher I work with is AMAZING. He has been completely and understanding, and so has the whole program. Each person knows I have done a lot of work already and don't worry about anything else. The teacher I work with sat down with me one day and knew I was upset, I sat there and cried. Worried he was upset with me for not coming in occasionally, worried he thought this was not real. He told me that I should never worry like that and he is there for me and would do anything to make sure I am mentally okay. That made me feel so much better, and realize that was important. After this year I may be a TA or an RA (depending on if we get a grant we applied for).

Unfortunately I cannot change advisors, but I am currently (just started a few weeks ago) working at Methodist hospital on cancer research. I make steroids (good ones, lol), and we found out that they work well for many cancers. One of them is amazing for colon cancer. In the short time I have worked there, I feel like they care about me. That I am important to the group, that I have a purpose and am wanted and cared about. This advisor told me to take any time I need, because my health is the priority. I love being there, I love knowing that something I made could make a difference in cancer research. I feel accomplished, and happy. I could stay there an feel all of my emotional sadness and fear melt away.

That is what I feel like I need on campus. I have known people on campus with health disorders that may have graduated in 5 and a half years instead or something. As long as I am accomplishing what I believe is right and what I am interested in, then I will make it. I was mostly upset because I was given a B+ this past semester for research, and I always get an A. I honestly believe it is because of my health issues and that does not seem fair to me at all. That upsets me. Especially since I am trying to get a paper out and a NEARLY FINISHED manuscript is sitting on his desk for him to review (honestly only a paragraph or a page at most-out of 11) for several months.

I know that physical therapy can take time to help, but I am thankful I am doing it. I have an awesome PT, and I can already see some improvements, but also know what I need to work on. It gives me hope.

I am up front to anyone and everyone. I think it is important to be that way, I let me advisor know what is going on, but still don't believe I am listened to. When I told him that I was going through something serious (with the urinary retention as of late), I did not receive one word or acknowledgment of what was going on. He never used to be like that so I almost wonder if he believes I am making it up for a long vacation-yeah a vacation filled with caths and painkillers is the way to be! Not really.

Thanks for letting me vent. I have a few ideas of what to do after my holiday with my family. Also, I do the IC diet, have been doing it for a long time. It helps, but sometimes I cheat, it can be hard with some things for me!

I also have a cushion for computer times. I have been looking at anything and everything to help! This past semester has just been a lot, and wish that people could try to understand what we go through daily. If only they could walk a mile in our shoes.

Grad school is about learning, and growing as a person. Finding your individuality in a new realm or subject. Getting you ready for what you would like to do in the real world. We all can't be perfect, and we all have tough times. Especially when dealing with an illness that we deal with daily. Life gets in the way sometimes, and I almost wish that other people would realize that.

Thank you all.

Erin

**VT101** · 01-04-2011, 03:17 PM

Stay strong girl!! I am in a similar boat... finishing my Master's degree (currently writing my thesis), the job I have is moving 2 hours away, so I am looking for a new job, and my Grandma (who was like a Mother to me) just passed away. Stress makes my symptoms worse, and I get so overwhelmed and stressed that I have forgotten what life was like before school and work. I get so frustrated at friends and co-workers who complain they have too much free time... because I study/write and work 24/7 and would give anything for a hour to just sit back and do nothing.
Stay strong and take one day at a time. I've learned that the PFT and kegal exercises help, and so does slow, focused breathing and relaxation.

**ermkenne** · 01-04-2011, 04:12 PM

Update-Good Things

Hello all,

Thank you for your kind words. The other day was my big day back on campus and I was very overwhelmed: did not want to encounter my advisor, afraid of the fact I may need to cath on campus, and just scared.

First of all, I did need to cath in the restroom. I had never had luck cathing on a toilet before. Did not help I dropped my mirror in the toilet, there were people in other stalls. I left and I cried. I talked with my guy friend and told me to calm down and either try again or go home and come back. Well I tried again, determined as I am. Even with no mirror, I was able to cath myself. I felt much better, but still embarrassed. I was happy though that I overcame that fear. It was a good moment. After that I encountered my advisor, and he asked me how I was doing and it was sincere. I basically broke down, cried, and told him my worries and fears. Fears that he may think I am making it up, fears that he was upset at me for this. He assured me this was not the case, and told me that it was hard for him to talk about it all. Just speechless. He said he cared, and realizes that I will/need to graduate. He also explained that this is something I did not ask for, and that he did not think about that before and realizes that we will get through this. And hopes that I will finally feel better sometime.

He also gave me work advice. He said he did not care if I set up a reaction, and if it had to go overnight-I could go home. If I could not come in the next day, ask for help. As long as I made progress. Just do what I could, even if I have to leave early. That was something we did not discuss before and it made me happy. It was what I needed to hear. I decided to cut back on my job at the hospital (my boss there said my health was number one and I need to remember that, work is work, and I have all the time I need to accomplish my goals. He was very kind).

Today I had to cath in the restroom, and did not get upset, just got my stuff and went got it done to relieve the pain and pressure. I need to do what I need to do. It sucks carrying around a catheter wherever I go, but it is what I need to do to get through this. I know I am strong, along with all of us and we can do what makes us scared, embarrassed, uneasy, and find ways to deal with pain. I had a talk I needed, and it is one less stress I am feeling. Now I understand why my grade was lower last semester, we should have had the discussion back then and I think it would have been different. It's just important that we did.

I just wanted to share a good update with everyone. Thanks for sharing your stories, and I am sure that I will have more to come. I am still working on my PT for the developing PFD, and have bought a TENS machine (50 dollars at CVS-they are carrying them now, and my PT was very impressed by it). Also, it really does work!! If anyone has a question about it PM me. Just wanted to share a good story.

Erin

**SFGirl** · 01-06-2011, 04:32 PM

Hi Erin,

I am a couple years older than you, and was working in a hospital research lab. I had planned on applying to graduate school, but then I got debilitating eye pain...I could barely open them. It was and still is excruciating. I couldn't handle it anymore and quit, hoping that some time off would help my corneal pain. My condition was rare, invisible, and no doctors could help me, so I couldn't explain to anyone that I was in pain and not faking it. Two years later, I am now struggling with IC, PFD, vulvodynia, and possibly endometriosis on top of corneal neuralgia.

I think that you are doing a great job in dealing with all of this. Most importantly, in being open and honest about your concerns with your advisor, which is not an easy thing to do, esp about such a sensitive topic. I am also so glad that you seemed to have lucked out with an empathetic advisor too (I know some are horrible!).

Asking for help is SO tough esp when your illness is invisible, but if things get really difficult (which I hope they don't), you can always discuss with your advisor some time off, or to take a bit longer to finish your PhD. I hope things get easier for you soon and that managing school plus IC will get easier as time goes on.

p.s. Congrats on the self-cathing in a public restroom!!

**ermkenne** · 01-09-2011, 04:43 PM

Thanks a lot SFgirl.

I am sorry to hear about all of your ailments. These disorders are never easy to deal with, especially when life gets in the way. I have already decided to further discuss things with someone on my advisory committee. He has been around for quite a long time, and really understands people. I have always looked up to him. I have a friend who had him as an advisor and he treated her like a daughter. Usually the 'norm' is 5 to 6 years. So if it isn't 5 years, to me, what does it matter? I hope talking with another faculty member, who has been around for a while will really help me out. I will get it figured out. There is no way that I will quit or let this stop me, that is not the type of person I am.

Thanks for the congrats. Also, you have to remember that I did it with no mirror!

That was a pretty big accomplishment for me, and pretty proud of it. Never thought that would be something I would be proud of, but it can be done. I will get through this. Just need to talk to the right person, and at least I know who that is.

Thanks again.

Best wishes, and I hope that all is well with you.

Erin

**nitheninny** · 01-10-2011, 01:08 PM

I can't relate 100% as my IC is mostly just pain before/during/after urination as opposed to pelvic pain, but I can relate 100% to the whole feeling too old for the aches and pains your body gives you. I've also got endometriosis, occasional migraines, and I pinch nerves in my neck all the time. Any time I even mention being in pain or discomfort, my mom made a joke about how I'm always complaining, and even though I knew that she meant absolutely nothing by it and is always there to listen, it made me not want to talk to her about it. So I told her today, and she apologized.

I'm also in school, though a different setting, where I'm sitting in the same seat, same classroom, for 6-8 hours a day, and then studying for another 3-5 once exams pick up. And while my IC isn't completely horrible, the last thing I ever want is to go to a public restroom and be in there for the entirety of my 10 minute between-class break, trying not to cry from pain. So I definitely can sympathize. I think IC sucks no matter what lifestyle you lead or how bad it is, because either way it interferes with your life in some way.

Are you doing anything to manage your anxiety/depression? I know my urologist mentioned a drug they use for frequency that is an antidepressant. Or you could look into counseling services, most universities offer them for free to students. Or look into yoga classes at your local gym. Try to do something that lets you relieve some of the stress.

**ermkenne** · 01-13-2011, 05:22 PM

Hello nitheninny,

I am managing my anxiety/depression through medication. I am on Klonopin 0.5 mg up to three times daily for anxiety and cymbalta for depression. They kind of believe that I have more of an anxiety issue, which I definitely believe. I am also on Elavil 25mg (which I believe you referenced), which is a tricyclic antidepressant used for pain.

I have looked into counseling services on campus, but found out my counselor would be leaving soon, so I would have to start all over again. Kind of frustrating. I am going to work on writing more (blogging-one of my doctors mentioned it to me). I also talk to friends and family, who are all very supportive. My boyfriend is a wonderful person who also helps.

I am going to be talking to someone on my advisory committee next week (very friendly and kind person), so as to have an outside person listen and advise me on my research progress. I am working through it. Sometimes, just take it one day at a time. I am not going to let it stop me, even if that means cathing in public restrooms (which I have done with no mirror a few times), taking breaks on campus, and adjusting my schedule. I spend many days on campus in the restroom crying. I completely understand what that it is like.

I am determined to do this, and work through the pain. I think through all of the tears and pain we all deal with, we will find a light. Or at least we will hope to. Sometimes it seems so dark to even see a glimmer of hope, but when we find that glimmer we need to hold onto it.

I can't tolerate a lot of sitting. Being in a car is getting worse, I just go into instant spasm. This week has been a big getting back into the swing of things. Been adjusting to working more. Used my TENS unit to help with pain, and realized I can leave early if need be b/c of pain. Things are getting better.

The pain is still tough, but I can hope that all of us can get through this one day at a time.

Erin

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Graduate School and IC

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