two years post op today and still struggling

Hi sisters,

I have been away for a couple of days, and now I'm getting caught up on the posts....WOW how much we all have in common....I too had that inner voice that I completely ignored...I thought that the hysterectomy would solve so many of my issues, but of course created a whole bunch MORE!!!! We didn't ask for any of these problems and we traded problems for more problems...But we do have each other and we have all met due to our current problems....SO, this is probably the only good thing that has come out of it New friendships!

I went to water park yesterday with my children and I am paying for it today but I want to give them some type of a normal summer..This has affected them too. I had to keep changing tampons and I hated the thought of leaking into the water but the things you will do for your children. LOL I was so swollen and bloated when we got home and now it seems like I'm leaking more, but it could just be because I'm trying to be more active.

I haven't done anything about my dr. situation or making new appointments. I wanted to have a couple of weeks where I can at least pretend that everything functions the right way. I'm trying to escape from reality for at least a little while. But next week I need to get focused again and start this process all over again....I dread doing it but I know i have to come to and end and get my OLD body back..someday!!!!!!!

Hugs,
Christy

I know what you mean. It is really a rollercoaster trying to balance everything. Mine is like I want to be normal but then something jumps up and bites me big time. I am going to be positive about this.

Ladies I don't know how to be positive when it hurts so much all the time. I can't sleep, I can't do any of my hobbies, I can't teach my son to drive, I'm too swollen to fit any of my clothes. Even dinner in a restaurant is torture for me because it hurts so much to sit. I'm coming up in my one year hyster-versary and I'm very sad.

Do you have a pain doctor? I know how you feel because that is what happened to me about the same time span. I was so sick, had so much pain that I was seriously thinking I couldn't do this anymore. I was referred to a pain doc who has been a godsend. Sometimes, I still take it day by day depending on my pain. It isn't easy but there is help. I would talk to your primary or go to a pain clinic and get some help. I feel your pain and do understand this. And believe me, being positive was not even in my vocabulary!!!

Ya I've got a pain doctor. I see an anesthesiologist at the Psin Clinic. He has prescribed Lyrica and Percocet, and it really doesn't cut it. He wants me to try this for a little longer. Also
seeing a physio who specializes in pelvic floor. I'm just looking forward to getting my life back one day.

(((Sugarandspice)))

(((lsavril)))

I had limited internet access for the last couple weeks because of attending a couple funerals, a wedding, youth camp, a graduation, out of town guests... Yes, I am tired! But I think I finally caught up on !

Now in answer to your questions to me:

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Originally Posted by lsavril First I want to thank you for your support and kind words, they mean so much to me.

Having lived with chronic pain and health issues for several years, my goes out to women on that road and I want to help anyway I can.

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I do have a GI dr, he has been limited help... he just said I need to come up with my own regimen. A mixture of stool softeners, fiber supplements and diet and then he said I need to stop worrying so much in my life because that effects my IBS.

I can't do fiber supplements at all. My gastro tried me on a variety of them and finally took me off of them completely. There have been other women on the site who have found the same thing to be true for them. In the end, I simply used Miralax once a day, adjusting the dose from half to a full dose depending on how I was doing. (Initially, Miralax was available to me by prescription only so I was working closely with my gastro on the dosing as it was not available OTC until later.)

Stress definitely worsens IBS. To this day, a stressful phone call can send me right to the bathroom. But I, too, hated it when my doctors would suggest minimizing stress. I asked one if I should move to a deserted island! Not very feasible to say the least, but with IBS and/or chronic pain and chronic health issues, we really do have to work to manage stress well as it does negatively impact our already problematic situation. Learn to take a walk, soak in the tub with a good book, have dinner with a friend, etc. when you feel overwhelmed. See if any of the information in this HS newsletter is helpful: Managing Stress

Also, accept that you have a new normal now even though it is not what you want. Yeah I know, that doesn't settle well. And by "accept" I don't mean give up or give in. Finally accepting my situation allowed me to more productively manage it and finally get to the place where I had more control over my body instead of it having control of me. Stopping the inner battle in a sense allowed me to take charge as I was then able to realize I had a new normal I had to work with rather than trying to make my body work with the old normal which was impossible and just left me even more defeated and depressed. The articles in this HS newsletter might be helpful: Chronic Pain

Additionally, I did have a good support system as far as my DH and DS's, but not much from there. Because I didn't look sick per se--yes, I was pale, had lost weight, and didn't look very , it was hard for some to realize how much pain I was dealing with. A family dinner or potluck was hard for me in many ways besides the IBS flare that would occur. This article might be helpful for letting those around you understand what your new life is like: But You Don't Look Sick -- The Spoon Theory

You also need to remember that taking care of yourself and getting enough sleep will be crucial on your path to good health. There are some tips in these HS newsletters:Emotional Health, Healthy Sleep 2012/Sleep Health 2011/Sleep Health 2010, and Be Good to Yourself

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My urologist said sometimes taking a magnesium supplement helps.

Magnesium can help with digestive issues and should be used if you are taking any calcium. It can also prevent kidney stones. But work with a doctor on the right dose for you.

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I did want to ask you I noticed that you suffer from fibromyalgia and migraines. Did that happen after the hysterectomy?

I have had headaches since 6th grade but they did worsen after my hysterectomy. It is not that the hysterectomy was the direct cause, but I had complications with my hysterectomy that left me weak and in poor health. Thus, some underlying health issues my body had been able to compensate for came to the forefront and I could no longer ignore them. I ended up in a chronic pain cycle we couldn't break that also lead to the fibromyalgia diagnosis (though an injury and caring for my grandmother played a part).

If you have migraines, this HS newsletter might have some helpful tips: Managing Migraines and Chronic Pain

For me, working with a neurologist and using a prophylactic daily medication did help, along with some of the tips in the newsletter.

I wish you and all the other women well! I know this can be a hard journey. Keeping the detailed symptom diary can be key for finding the right treatment plan, along with surrounding yourself with medical professionals who are willing to work with you as an individual when you don't fit the typical box.

Hey ladies,
I think I've overdone it these last few days....went to water park and then spent 3 hours at pool today....I had to keep tampons in and I'm wondering if they are actually making my situation worse! Now it seems like I'm leaking more and more!! My kidneys are hurting and so is my abdomen..I want so much to get back to normal and give my kids a fun filled summer which they desperately deserve, since they didn't get one last year!!! I am paying for it now BIGTIME!!!! I just hate this feeling and none seems to understand, I look normal and I'm doing my daily routine, but it's because of my meds that I can even do this...by then end of the day, i look so pregnant....I get so discouraged and fed up with all this....I so understand everyones pain and issues...My quality of life just sucks! I want and try to make it so normal, but boy does it backfire on my....I tire out so easily and my boys try to understand but they just want their active mommie back....

I just feel awful and I'm so done with all this and the sad thing is I'm not done!!!! At times I'm so overwhelmed with EVERYTHING I can't even make a simple decision like what to eat for dinner...I'm on antidepressants, which I've never had to take before in my life before all this....Sometimes I can't even focus on one thing, I just get so anxious and usually end up just walking around in a circle trying to figure out what to do next. I know that sounds weird, but its the truth...I am so discouraged and scared! I'm hurting and I needed to vent, I know you all know exactly how I feel...

Thank you for listening....I'm just weary of all of this!

Hugs,
Christy

Christy! I totally understand what you're saying and I'm sending you big cyber hugs. You are an awesome mom for trying so hard to give your kids a fun summer. I am glad you came online to vent and give us the opportunity to support you.

Weiser,

Thanks for getting back to me. I know it is hard when you are really busy to have anytime to do things like type letters.

But I thank you for your response to my post and your experience and insight.

Yeah, I haven't been able to handle the fiber supplements either. I get really bloated and abdominal pain. I also tried the Miralax and it just didn't seen to work for me. I take the stool softeners and trying to control my diet. The magnesium helps some but makes me a little nauseated. Figures. So I take prunelax a lot. Which isn't good to take laxatives but that is one of the only things that works. I have to do what works at this point. I drink lots of water and lots of fruits and veggies. Who knows at this point. But I have been living with IBS all my life. For stress I have been doing some meditative yoga lately. It does help me relax but I haven't seen a change in my IBS.

I am the same as you. My migraines got worse after the hysterectomy and I too became very fatigued, muscle aches and weakness general tired feeling. Like you everyone said I looked fine but doing things like just walking across a room was a major effort. So I wasn't fine. The blood work showed a Positive ANA with high titer and one of the markers of lupus is in the gray area. Not positive and not negative. If it goes one point higher it will be positive. So the doctors are watching that and when this all started they diagnosed me with fibromyalgia. I had some all over pains in my body before the hysterectomy but it got worse after the hysterectomy. i wonder if all of the trama to our bodies and hormonal changes kind of set the whole process in motion.

Thank you for all the information. I will have to check out the links that you have given me. It is truly appreciated.

I like the way you describe how you have acheived your new normal. That is a good way to describe what we are after the surgery. We can't expect to be the exact same way we were before the surgery even though it is what we desperately want to be. It is a hard thing to except. I try to explain to my husband that very same thing. He is also having a hard time excepting things. This surgery really does effect everyone in your family.

You feel well.

Great big hugs to you.

Your hystersister. Laurel