Re: Getting ready for second laparoscopy in a year and half
For more information on symptoms and treatment of endometriosis visit www.EndometriosisZONE.org.
From: Chelsi (anonymous@obgyn.net)
Tue Oct 20 23:44:40 2009
Donna,
Sorry if this has already been covered with you, but have you ever been
tested for IC- Interstitial Cystitis?? Your description of frequent
urination, burning, urgency, painful bladder, etc. all fit with
symptoms of IC. IC and Endo are often called the "Evil Twins" because
it is soo common for an endo patient to have IC also, or vice-versa. IC
can be diagnosed with a cystoscopy, either by a Gyn or an Urologist.
Best of luck to you!!
At Mon, 28 Sep 2009, Ann wrote:
>
>***Edited by Moderator on Duty for clearer reading.***
>
>I think you should consult with an endometriosis specialist. Look on
>http://www.endo-resolved.com/specialist.html to find someone who only
>deals with endo. Drs. Sinervo and Albee in Atlanta will consult over
>the phone for free. THe more scopes you do, the more scar tissue you
>form. You are so young in your reproductive years, if you do get
>surgery, this time you need to get rid of all the endo and most general
>gyn's do not specialize in that. best of luck.
>
>At Wed, 23 Sep 2009, Donna wrote:
>>
>>Well I'm just not sure w
ep to take.
>>
>>A little background: I was diagnosed with endometriosis through a
>>laparoscopy in December of 2005. In the fall of 2007 I had severe pain
>>in my bladder and on my right side and the pain was past unbearable. I
>>continued to have painful periods after my first scope and was in pain
>>from 2005-2008. My doctor at the time, gave me no medication, they
>>offered anti-depressants.
>>
>>I was taking birth control but stopping to have a period every month,
>>which was in short, killing me. I wa
>
>ery single day and night period
>>or not. In January of 2008 I finally got a new gynecologist whom was
>>much more caring. In May of 2008 she gave me another scope and found
>>numerous new spots of endo and much of it on my bladder. She said she
>>could not believe how bad it was just since my last scope in 2005. She
>>put me on the pill full time to stop my periods. It took me about 3
>>months to really feel recovered after the scope - I went back to work a
>>week after but had variou
>> for over 8 months I had
>>no periods, no frequent urination, no buring on my right side. It was
>>amazing. I couldn't believe how good it felt to be completely pain free
>>and I was not having emotional issues related to my periods and the
>>pain.
>>
>>In July of this year, I started spotting and then after lifting
>>something heavy, started bleeding a lot. My doctor told me it was OK,
>>just stop the pill for a week. She said this was normal and a lot of
>>women could not take the pill as long as I had continuously and not stop
>>to have a period. So I did. Two days into my week off, I thought I was
>>going to die. I have suffered a lot of pain with endometriosis and I
>>don't know if this was worse or if it was because I had not been in pain
>>in so long, I really did think I was going to die. The pain literally
>>brought me to my knees. She put me on pain killers and told me to start
>>taking the pill as soon as my bleeding slowed down (it was very, very
>>heavy.) So I did that.
>>
>>Now nearly 2 month
back on the pill full time, I have had no
>>spotting. However I am in pain again, urinating 4 or more times a
>>night... having burning on my right side (constant), terrible back pain
>>and pain in my right leg. I'm also having painful during intercourse,
>>which is a symptom I never had with any severity. We've waited to see
>>if it would improve, but it has not and is interfering with my quality
>>of life again and ability to function in my day to day life. This is
>>heartbreaking for me. I cannot lie and tell you I am not fig
>ion after not having to deal with this for a little while. The
>>pain is worse on my right side and I've never had so much pain in my
>>back in my life. I cannot bend over. It's mostly my lower right side,
>>but goes up my back to the middle and across. I run a farm so I do
>>lift, but I've been avoiding it, and lifting less than usual.
>>
>>My doctor said our next course is to try Danazol, or to do another scope
>>so she can see what it going on. She also said, next time I start
>>spotting, we'll double
>> not stop for a week again.
>>
>>I don't want to take Danazol. I am trying to be open to all options but
>>since I was feeling so good before I had this period, I am leaning
>>towards another scope and then taking the pill continuously again and
>>hoping without a period I will have longer pain relief. But I do not
>>want another scope, definitely not so soon after my last one and I worry
>>about the healing. I trust my doctor, she deals with endometriosis and
>>she is very compassionate. She has told me if I wanted a hysterectomy
>>it might be an option but that it's not going to cure this very likely.
>>I am 24 years old. I do not want children, but I do want to be able to
>>live my life without pain. I feel very nervous about having another
>>scope just over a year from my last one. I feel like I should wait
>>until I'm in more pain, but of course that doesn't make any sense. Is
>>this the right thing to do? I'm not able to sleep at night from the
>>pain. I have
can't take them every night, and
>>function properly at the same time. I've been doing lots of hot baths,
>>heating pads... they distract me more than anything. I can't go far
>>from home because if I do not urinate right away I get pain and burning.
>>I feel like I have to pee almost all the time.
>>
>>I guess I'm just wondering if you all think another scope so soon is the
>>right course? I'm worried about my bladder so kind of thinking maybe she
>>should look inside and see what's going on, but I'm also hoping maybe
>>the pain will calm down
>
> trauma of the period.
>>But it's almost been 2 months and it's gotten worse if anything.
>>
>>I just don't know what to do and as anyone with endo knows, it's very
>>difficult to just simply discuss somehting like this with anyone who
>>doesn't have endo, they just don't understand what it feels like
>>physically and emotionally.
>>
>>I felt like I was winning a battle and someone just took away courage.
>>Although I'm trying. I do trust my doctor. She does not try to push
>>anything on me and is the most caring docto
>>
>>either option would be one to start with, but I just can't bring myself
>>to do the danazol. I've considered doing nothing, but I can see that's
>>not going to get me very far. I worry about the new scar tissue and etc
>>that will occur because of the scope. I guess every option has it's
>>pro's and cons.
>>
>>Sorry for going on so much, I cannot believe how much just letting it
>>out helps. With endo it's easy to feel completely, completely, alone.
>>
>>Thanks.
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