Feeling pretty low...

Hi Hyster Sisters...
I check in here time to time - and feel my story is too long to tell - read others like me feel a little better and click on to the next site. Is that selfish?
Today I am feeling pretty low - my very supportive DH is working double time today - and I was thinking who else can I vent to?
I am the one that always keeps going - no matter what - I bounce back - telling myself this will be over before I know it. I am the one that ALWAYS sees a light at the end of the tunnel...the bright side of things. Today I am having a hard time bouncing back....
Here is my story -
March 11th 2004, I had my second daughter (3rd pregnancy and delivery; all vaginally). (My DH also has a son from prev. we have 4 together, his, mine, and ours). By the end of March 2004 I was in surgery for my first D&C. By the end of April 2004 I was in for my second D&C with a hysteroscopy. By the beginning of June 2004, I was in for my third D&C with another hysteroscopy. Retained placenta, retained fragments, and some mysterious tissue within the uterus were the findings. All benign. By the end of June I was in for a Laporoscopy. By September 2004 I was in for a TAH, BSO, and now on HRT. I am only 30 years old. The following month October 2004 I was in for a very painful Hematoma from the TAH. The hematoma was 10cm in diameter.
By December 2004 I was seeing my Dr every 5-10 days to have polyps (granulation tissue) removed. (3 occasions of this).
This last Monday I saw my Doctor again, he has found more granulation tissue, however this one is bigger and attached to more nerves... he was not able to remove it in the office and is scheduling me for ANOTHER (#7 ) surgery...this one will be heavy sedation not total anesthisa (Spelling?)...however I could do without hearing the word SURGERY!
Let me back up a little...the Lap back in June/July diagnosed an adhesion on the right side attached to my appendix and intestine as well as Endometriosis. Dr cut down the adhesion and removed the Endo that he found. Pain and heavy bleeding were still there as if nothing had been done. Since my husband and i have 4 children between us ...(his, mine, and ours) we decided to get my life back and go ahead with a hysterectomy, this was done on Sept 15th...the time between the lap and the hysterectomy the adhesion on the right side had formed again, the dr cut it down again and put in a barrier. (He also put a barrier somewhere near cul-de-sac I think was what he said)...he removed this barrier when he removed the hematoma...he said it had not started to dissolve as it should have.
I am still in a lot of pain mainly on the right side...spotting which Dr says is due to the gran.tissue...

I am exhausted all of the time...on Premarin...the doctor says I am not ready to go back to work...I am going on 12 months of being off work...

I feel a little better after typing all of this...I just wish there was something that told me an end was near...however - I have been reading on ARD...which sounds like I may be a candidate considering history....? In which case is there an end?
I am scheduled to meet with my Doctor tomorrow...will see what he foresees...as if they have a crystal ball!
Will try to keep my head up...
I am so tired of saying I feel OK when someone asks...then they hear i am having another surgery ----they say I should sue the hospital...!! Like that would get me anywhere...no one really gets this...!

Michelle,
I'm so sorry to hear what you're going through! It's hard enough to get people to understand that you need to be off work for 6 weeks, let alone 12 months!

I hope you and your Dr. can find a solution to permanently deal with this.

Keep coming here and good luck,
Virginia

Dear Michelle0908,

My goodness, I can completely understand how frustrated you must be feeling with everything that you've had to deal with these last months. So many surgeries and only 30 years old.

I had several laps done over the years for endometriosis, but nothing like you describe having gone through. I had a TAH/BSO on October 1st, and after about 10 days it was as if I didn't have any surgery at all - no incision pain, lots of energy, like I had the world by the tail.

As of late I keep hearing stories about women who have had nothing but difficulties since their surgeries - with the exception of having difficulties with my HRT, I can quite honestly say that I feel like I did when I was in my 20's (I'm now 41) and that I would do it all over again in a heartbeat.

I had extremely heavy periods (anemic every month), endometriosis that had recurred without anyone realizing it, (for years I'd been complaining about lower left quadrant pain, and my previous doctor told me that I had cysts), and my periods had become very irregular (flow 9 days, stop for 10 days, flow again for 6 days, stop for 12 days, flow....on and off and on and off). With all the hormone flux came horrible migraine headaches...practically every day I either had one, was just finishing one, or would be starting one...to the point where I counted the hours in between rather than the days. I was on Percodan all the time for pain (or Demerol when I absolutely couldn't stand it any longer), and still had to function day-to-day (as best I could) with having the three girls in three different schools! Even with the HRT challenges that I am currently going through, absolutely ANYTHING is better than what I was living with before!

I feel bad that I cannot offer you anything more than moral support, but I hope that knowing that someone else understands how you're feeling helps you realize that you are not alone in this.

I too see my doctor tomorrow about (hopefully) another course of HRT to try. Onward we go, and hopefully we both get some encouraging news.

Take care,

Dear Michelle -

I know you wrote mostly to vent, but I wanted to be sure you heard from those out here in cyber land how much support we're electronically sending your way!

I, too, have had multiple surgeries for endo and the complications it causes, and my hysterectomy came with unexpected surprises, too (appendectomy, bladder repair, urethral implantation, and mesenteric resectioning to remove more endo). One ovary was able to stay in tact, so at this time I am not pursuing HRT. My question is related to Endo and the prevalence of hormones in our bodies after surgery. I have read conflicting reports online, and my doc said there are no guarantees either way that endo won't recur. Sigh.

Maybe at your next doc appointment you could delve more into the role the hormones may be playing in your recurrences? I am sure you've already thought of that - please forgive if I am treading already worn territory... It appears from all I've found that the "experts" are not sure about it; there are pros and cons on both sides of the yes/no tally. Right now, I think our generation of women with endo are probably undergoing the treatment options that will eventually help doctors and patients deal with endo in much less barbaric ways. Sadly, no time machine lying around the house...

Know that we are commiserating with you and wishing you a speedy path to feeling more whole and in control!

Angela

Thank you for all your comfort - I replied to another pm that was sent to me that I was beginning to feel kinda silly for complaining so much - I know there are a lot of people out there that are worse off then I....and what I have is not terminal - so I should not have anything to complain about...
However, after all of this support I have already received in the last few hours my tears of anguish have turned to tears of joy for the moral support! Thank you all sooooo much.
I will check in and write more on this site...hope I do not start boring all of you!
will keep you posted ...I have also realized how supportive my doctor is of the whole situation compared to other hystersisters out there!

Thank you again!

Back from doctor...scheduled for removal of granulation tissue next week. Dr. is calling a friend of his that is a pathologist to see why the tissue is so painful by touch for me...
I also read my pathologist reprot from the TAH...today. A little more confusing then enlightening for me.
I was trying to understand more about the adhesions I have... and I came across all of these other terms that I am not sure of...
I am going to post another thread titled Pathology report questions...that way if someone replies with help - it can help more of us understand!
Thanks again ladies for all of your support...I am feeling a little bit better (emotionally) today. We have to wait this next surgery out to see how the healing is going...right now there is a lot of pain still!

Take care all!