Lost and confused..needing some pixie dust to guide my way

[luvmarypoppins]

Sending prayers for a speedy recovery.

Wishing you all the best and update us when you can

 

[mommasita]

Thinking of you

 

[rewardsinlife]

I made it!

Surgery was 5 hrs. Long and very extensive. Dr. Was able to do it laproscopily with 4 holes and with robot assistance. Removed all of the cysts and were able to get them off of my ovaries without taking them. My left Fallopian tube is completely matted and shredded from scar tissue from the endomitriosis. Dr. Said it was the most severe case of endomitriosis he had ever seen. It has spread all the way up to my chest, throughout my entire abdomen, attached itself and caused scar tissue to every single organ..including liver, bladder, appendix, colon, intestines, kidneys, uterus, ovaries, tubes, spine and pelvis. The large mass that was found turned out to be a tennis ball sized oozing blood clot that just kept growing bigger and bigger with each period I had.

So surgery was successful in removing the large possibly life threatening cysts and blood clot. Dr. Removed as much as he could of endomitriosis but couldn't take it all as it would just grow back. I will be on lupron now for upto 6 months and on birth control. Also have to take 600 mg of Advil pretty much around the clock when I am on my period to slow down the inflammation.

I was admitted over night and for the majority of the day yesterday. Got home about 7 and fell asleep in the recliner. Stomach is pretty sore from incension sites, though my shoulder had been in the most pain from apparently the gas they inject in during the surgery and from positioning. Have a huge knot there so have been trying to use heat, pain meds, and massaging to get it out. Starting to eat solid foods but going pretty slow as I am not very hungry and hurt.

Still exhausted and looking at a bit longer of a recovery than I first thought because of the extensive nature. I am glad I do not have cancer though! this will be a chronic condition that I will have to deal with carefully for the rest of my life until menopause when it goes away..or I decide to get pregnant. Been quite a journey, and now the healing process begins.
thank you for your thoughts and prayers!

 

[omalley1118]

Wow!!!! That sounds very familiar. I had stage 3 or 4 endo. The surgery was long and intricate. I had great success with Lupron, prior to the surgery. I did 6 months and then had 18 months of living pain free. After that, when the pain cam back, I decided to have a total hysterectomy. At the time I was 39 and starting nursing school. We had adopted two kids and were done on that front... I wish you luck with your recovery!!!

 

[Robbi]

I made it!

Surgery was 5 hrs. Long and very extensive. Dr. Was able to do it laproscopily with 4 holes and with robot assistance. Removed all of the cysts and were able to get them off of my ovaries without taking them. My left Fallopian tube is completely matted and shredded from scar tissue from the endomitriosis. Dr. Said it was the most severe case of endomitriosis he had ever seen. It has spread all the way up to my chest, throughout my entire abdomen, attached itself and caused scar tissue to every single organ..including liver, bladder, appendix, colon, intestines, kidneys, uterus, ovaries, tubes, spine and pelvis. The large mass that was found turned out to be a tennis ball sized oozing blood clot that just kept growing bigger and bigger with each period I had.

So surgery was successful in removing the large possibly life threatening cysts and blood clot. Dr. Removed as much as he could of endomitriosis but couldn't take it all as it would just grow back. I will be on lupron now for upto 6 months and on birth control. Also have to take 600 mg of Advil pretty much around the clock when I am on my period to slow down the inflammation.

I was admitted over night and for the majority of the day yesterday. Got home about 7 and fell asleep in the recliner. Stomach is pretty sore from incension sites, though my shoulder had been in the most pain from apparently the gas they inject in during the surgery and from positioning. Have a huge knot there so have been trying to use heat, pain meds, and massaging to get it out. Starting to eat solid foods but going pretty slow as I am not very hungry and hurt.

Still exhausted and looking at a bit longer of a recovery than I first thought because of the extensive nature. I am glad I do not have cancer though! this will be a chronic condition that I will have to deal with carefully for the rest of my life until menopause when it goes away..or I decide to get pregnant. Been quite a journey, and now the healing process begins.
thank you for your thoughts and prayers!

Glad your surgery was successful. I had pain in my shoulder after a laproscopic procedure. That hurt worse than anything else.

 

[robinb]

I just saw your thread today. I am so glad that your surgery was successful and that you don't have cancer. I had no clue that end endometriosis could invade your abdomen and scar your internal organs like that . You poor thing! Pixie dust going your way for a speedy recovery .

 

[mommasita]

So glad you posted..

You will need rest and a lot of it. The shoulder pain I had as well.. It is the gas, I hope they told you to walk as you can, this will release the pain..

Rest up.

 

[omalley1118]

So glad you posted..

You will need rest and a lot of it. The shoulder pain I had as well.. It is the gas, I hope they told you to walk as you can, this will release the pain..

Rest up.

Great advice! Keep in mind also that the pain killers can cause a wicked constipation. Walk as you can, drink plenty of fluids, and take an OTC stool softener or fiber supplement to avoid this.

 

[rewardsinlife]

Yes, my shoulder pain is much better today...moving around helps get out that gas. And working on upping my fiber and such to combat the constipation. My grandma actually sent me an edible arrangement so I am getting quite a few fruits everyday! One of the best gifts ever! Stomach is pretty tender today, but am trying to work on alternating the strong meds with Advil so I don't sleep so much! But I guess that is the body's way to recuperate. Plus, when I am asleep, no pain!

Well sleepy again..even thought woke up two hrs. Ago! time for a nap!

 

[robinb]

Those edible arrangements are the best! I send one to my mother for Mothers Day every year. Enjoy your treats and take care of yourself {{hugs}}.

 

[rewardsinlife]

I cant seem to find this anywhere...since I have been diagnosed with stage 4 endometriosis..what is the ultimate prognosis? I know I will be either pregnant, in menopause, or on birth control for the rest of my life..but what else? Normal life expectancy? Constant scans? I know there is damage already to all my organs...so now what with that? Should I be asking these questions of my dr. At the post op on the 15th? Anyone have any insight? any time I google it anyway, I just come up with random support groups that always connect back to infertility and having babies. Not that I wouldn't like to have a baby, but that isn't in my mind right now.

 

[StitchesGr8Fan]

I cant seem to find this anywhere...since I have been diagnosed with stage 4 endometriosis..what is the ultimate prognosis? I know I will be either pregnant, in menopause, or on birth control for the rest of my life..but what else? Normal life expectancy? Constant scans? I know there is damage already to all my organs...so now what with that? Should I be asking these questions of my dr. At the post op on the 15th? Anyone have any insight? any time I google it anyway, I just come up with random support groups that always connect back to infertility and having babies. Not that I wouldn't like to have a baby, but that isn't in my mind right now.

I've got endometriosis too, stage 3, but it has only spread to my intestines and bladder. For me it causes intestinal cramping and bladder spasms. The doctor says my uterus is just like one big bruise. However, I got pregnant on my second try (naturally) so there is hope.

I don't think it impacts life expectancy except in the rare cases where the endometrial tissue gets to your heart or brain (yes it can get there). Now that you know what it is and will be on birth control treatment, progression will really slow down or be put on hold. You will probably be on BC until you decide to get a hysterectomy or go through menopause.

Glad your surgery went well and there was no cancer. Endo is a pain in the uterus, but there are so many other diseases that are worse that I'm grateful that this is the one I got.

 

[rewardsinlife]

Just wanted to give a quick update:

I was doing great one week out and down to 2 advil pills a day. Unfortunately, day 8,9,10.. Were not so great. I went to the ER on sat. After having a temp of 102, severe nausea, and pretty horrible stabbing pains in my bladder. After CTs and blood work, found out I still have an air bubble from the surgery and I also have a pretty good uti infection going. : oh and quite the constipation too...I literally have not had an 'efficient' bm since the surgery!

So now I am on 2000 mg on antibiotics...most I have ever taken!
And the dr. Is watching the air bubble. Hopefully it will go away..otherwise more surgery to get I out. And laxative of course.

If you ask me...worst 3 words in the English language... " complications after surgery"


Guess Disney is going to have to wait...I will see you when I feel better!

 

[omalley1118]

Just wanted to give a quick update:

I was doing great one week out and down to 2 advil pills a day. Unfortunately, day 8,9,10.. Were not so great. I went to the ER on sat. After having a temp of 102, severe nausea, and pretty horrible stabbing pains in my bladder. After CTs and blood work, found out I still have an air bubble from the surgery and I also have a pretty good uti infection going. : oh and quite the constipation too...I literally have not had an 'efficient' bm since the surgery!

So now I am on 2000 mg on antibiotics...most I have ever taken!
And the dr. Is watching the air bubble. Hopefully it will go away..otherwise more surgery to get I out. And laxative of course.

If you ask me...worst 3 words in the English language... " complications after surgery"

Guess Disney is going to have to wait...I will see you when I feel better!

I'm so sorry!!! The recovery can be a real bi$@&!!! I am still in PT for my shoulder, going on 12 weeks now... You will get better, but I know those are easy words for me to say. I wish you comfort and a smoother path!!!

 

[luvmarypoppins]

So sorry you hit this bump in the road. Remember there is light at the end of the tunnel. Hang in there..and this too shall pass. It will just take a little longer.

Its good to know your care team is on top of everything.

My one cancer surgery turned into 7 in one year. 4 were not even for the cancer. I ended up with a bowel obstruction, seroma and 3 infections etc.

It took me a year to get back to Disney but it was worth it.

Take care of yourself and rest. One day at a time.

Sending prayers for you

 

[mommasita]

Complications suck, but they do pass..

Hoping they do quickly.. Constipation is almost certainty after anesthesia IMHO.. After that starts to ummm "run smoothly", you will feel significantly better..

Hugs to you

 

[rewardsinlife]

Haha it is amazing how much constipation can affect you after having abdominal surgery..well top it with a uti and infection from surgery..,yup ..pain.

Doing better now..though I feel like my days revolve around timing out medications. found out I am anemic..so add iron to the mix...I think I seriously had 7 different medications today..I will be glad to be done with antibiotics soon.

I received my first lupron shot today. Pretty much didn't have a choice..dr. Said it was so bad that I really need to shut down things so I can recover. So if I get a bit moody ..sorry in advance...I have been forced into menopause!

Starting back to work on Sunday. Yay for money coming back in!

 

[omalley1118]

Well, the next round of fresh Hell has started. Having a colonoscopy tomorrow morning in a last ditch effort to figure out the lower abdominal/pelvic pain. GI thinks its GYN, whelp GYN swears its GI. So far the ultrasound and CT have both been negative. My GYN says she has only seen one case ever of endometriosis flaring up after a hysterectomy, but I swear the pain is exactly like that... My colon as involved when I had the endo, so the GI said that the endo tissue can actually work it's way into your colon from the outside. lovely!! Either way, I hope to have some answers tomorrow. I have just squared the kids away downstairs while I go through this heinous cleansing...At least it might be good for a few pounds, right...LOL!!!

 

[rewardsinlife]

Well, the next round of fresh Hell has started. Having a colonoscopy tomorrow morning in a last ditch effort to figure out the lower abdominal/pelvic pain. GI thinks its GYN, whelp GYN swears its GI. So far the ultrasound and CT have both been negative. My GYN says she has only seen one case ever of endometriosis flaring up after a hysterectomy, but I swear the pain is exactly like that... My colon as involved when I had the endo, so the GI said that the endo tissue can actually work it's way into your colon from the outside. lovely!! Either way, I hope to have some answers tomorrow. I have just squared the kids away downstairs while I go through this heinous cleansing...At least it might be good for a few pounds, right...LOL!!!

Oh no! Yeah my colon has been attacked too which is why I have had some lovely GI symptoms the entire time..ESP. During my period. Oh man the cleanse...I do feel for you there! I hated that part before my surgery...tmi but..I felt like my insides were going to fall out!

Good luck and hopefully it went okay!

 

[omalley1118]

It went as well as it could have...the cleanse part. Not pleasant but apparently not as bad as it used to be... As for the test, it was completely normal. While I am thankful that i don't have colon cancer, I am not any closer to an answer for this pain. His suggestion was for my GYN to perform a laparoscopy to take a look inside for any left over endometrial tissue. Ah, no thanks!!! I just got back to work after my shoulder surgery... So, I am waiting to hear form my GYN to see what she thinks. It's really either the endo or surgical adhesions, and there's nothing you can do about the latter. In fact another surgery would only make that worse...