Beginning Lupron

[krchelle]

Hi!  I have posted a couple times, but just a quick history:

-Last March, I went to the ER with severe pain and was diagnosed with an 11 cm ovarian cyst.
-The cyst was removed  through an open laparotomy surgery in May and was benign.  Measured 14cm X 11cm at removal.
-I had severe pain with the surgery and recovery that never fully went away.
-I switched Doctors due to my doctor not taking my pain seriously, taking too much time to get appointments and my general uncomfortable feeling with the surgeon that did my surgery.
-My new Doctor felt my open surgery was unwarranted and could have been done through laparascopy.  He diagnosed abdominal wall pain (nerve pain) due to nerve damage from the surgery.
-6 months later, pain was worse and diagnosed with another cyst (small, this time)
-pain, bladder and bowel symptoms worsen in January
-February had an exploratory laprascopy and diagnosed with deep rooted endo that I never knew I had.  The surgery, somehow, seemed to bring on severe endo symptoms. (Looking back, I probably had some red flags I ignored, but symptoms were WAY worse after surgery)

So.....with all of that being said, my doctor wants me to try Lupron.  I have researched and found nothing all that positive, but decided to give it a try out of desperation and little other options. There are no endo specialists near me and I feel this is my only option.  I had some issues with the insurance covering, but they finally agreed and I begin the injections tomorrow.  They will be monthly for 6 months.  I go back in 3, we will discontinue if there is no improvement.

My question.....if you have been on Lupron:
How quickly did you feel any side effects?
What side effects did you experience?

I'm just wondering if I am going to start feeling crazy, or hot, or tired tomorrow?? Or if side effects appear over time?

Also, if you had a good experience with it or a bad one. please let me know.  I am already committed to trying it, but would love to hear from others and get a sense of what I could be in for.

Thanks!
Kristin

[ipurr2]

I too deal with the adhesion's, pelvic floor dysfunction...because like ticked..I was not diagnosed for years...I was actually in my 30's so MUCH damage was done, then, the disease was left to continue damaging for another 7 years and unfortunately...I have developed so many issues in this path...that are unfortunately just managed...I have many of my organs held up with mesh because the surgeon did not tack up my vaginal cuff and I developed pelvic organ prolapse, I also have a neurostim on my sacral nerves to help the nerves and muscles of the pelvic floor communicate better...I also do vaginal valium...and thought things are MUCH better...things will NEVER be the same because I got into the wrong hands rather then the hands of a skilled endometriosis specialists...so PLEASE see one of the surgeon's ticked recommends! It will be very much worth it! It will save you a lot of hardships in the long run!

[krchelle]

Thanks

[ticked]

There is one here not sure if you have heard of this one


Dr. Sherman Silber
The Infertility Center of St. Louis, St. Luke’s Hospital (http://www.infertile.com/closlook/biograph.htm),
224 S. Woods Mill Road, Suite 730,
St. Louis, Missouri 63017, USA
T: [phone]

*Dr. Silber is included on the map for his surgery for the treatment of adenomyosis. He is one of the only surgeons worldwide to offer the Osada Procedure, an alternative to hysterectomy in women with adenomyosis who wish to preserve their fertility.

Specialisation: FERT
Bowl/urinary tract surgery: Does own urinary tract work.


Dr. Charles Koh & Dr. Grace Janik
Reproductive Speciality Center (http://www.reproductivecenter.com/contact.html),
2015 E. Newport Avenue,
Suite 707,
Columbia Street,
Mary's Hospital Medical Arts Building,
Milwaukee, Wisconsin.
T: [phone]
E: ***@****
*Dr. Koh asks that prospective patients get in touch with him directly by email. He also operates in Singapore and is planning to start a clinic in Hong Kong.

*Dr. Koh is recommended by Dr. Redwine as the most skilled endometriosis surgeon in the USA.

Dr. Koh:
Specialisation: GYN only
Bowl/urinary tract surgery: Does all urinary tract and bowel work. Ubersurgeon!



Are any of these doable?

[krchelle]

Thanks Ladies!  I appreciate you sharing your stories with me.  I never thought I would be dealing with all of this now...in my thirties.  I have always been fairly healthy and never had these issues until the past couple of years.  Like I said, looking back, there were clues, but nothing like the severe pain, bloating, fatigue that I have now.  I'm sure this is probably why I was never able to get pregnant, but endometriosis was never brought up at that time.  I adopted two beautiful girls and never gave much more thought as to why I couldn't get pregnant.  Now, I'm feeling sad that pregnancy will probably never be an option for me.  Even if I can get this issue resolved without a hysterectomy, I know it may still be very difficult and I am certainly not getting any younger!

I live near the Indianapolis, Indiana area.  I can not find a specialist in that area, but I did some research last night and found a group of Gynecological Oncologists that also perform endometriosis surgeries through robotic surgery.  It may be worth a consult with them.  I also found specialists in Lafyette which is about 2.5 hours away from me.  If either of you have heard of doctors in these cities, good or bad, I would appreciate your thoughts...or anywhere in Indiana.

My plan is to continue on the Lupron for now, try to buy some time while I look for a specialist, then hopefully see one in the next 6 months or so.

Thanks!

[ticked]

I was on Lupron 3 times. I can't say it was bad or good. I do know that I did add back the first time but it made no difference. I never experienced hot flashes but I did have joint and muscle pain. I also have fibromyalgia so I am not sure if the pain of that just got worse or it caused it or not. Depression for me is something I have lived with almost my whole life and this drug by the 3rd month completely had me so depressed I didn't want to live.

I have met about 3 people that like Lupron and did well on it but the rest not so good. We all look for that miracle med that will help us with endo but if not removed correctly by getting the root of the disease it will just continue to grow.

Your surgeon is right a open surgery was not warranted and it could have been done minimally invasive through key hole.

I myself have nerve damage and pelvic floor dysfunction. Sometimes when Endo is completely removed you will still suffer from these things as well as scar tissue.

I took many medications such as Visanne, Lupron, Marvelon21 (BCP) continuously, amytriptaline (sp?), gabapenatin, and the one that worked the best for me after excision surgery was Marvelon continuously. My Endo wasn't diagnosed until I was 27 and it took 14yrs. and my endo was deep very deep.

If you are interested in any of my journey I am all over social media as "The Faces of Endo" and @EndoEndoForever.  I  also have a blog if interested. I have journals on here in my profile etc. I am here if you need me.

[ipurr2]

I am so sorry to hear you are in the hands of a clueless Dr. I did not do the Lupron thankfully...but I too was told the endo would be cured with hysterectomy and ovaries removed...which caused ALOT of other health issues...and the endo continued to grow and glue my organs together...
Because of my having had the hysterectomy when I said to different dr.s I felt the endo was back they said "NOT POSSIBLE" you had a hysterectomy...finally 7 years later I found an endometriosis specialist 4 hours away and he went in and sure enough...I was full of endometriosis and my organs were glued together despite the fact I had NO FEMALE ORGANS...and now I was in hormone hell...he cleaned me up and sent me on my way...but I ended up needing one more excision specialist to cut out  1/2 my colon because the first specialist didn't deal with bowel stuff...6.5 hours worth of surgery and I truly believe I have beat this disease but it has cost me 1/2 my life seeking help and being in pain...no children...pelvic organ prolapse...destroyed sex life...all because I got into the hands of the wrong dr. to begin with...this is why I keep screaming from the rough top...PLEASE don't waste your time on the non-specialists because in the end you will STILL end up with them doing excision surgery but you will have many other issues...the removal of my ovaries has caused my whole endocrine system to suffer dramatically...I have made peace with where I am now...but I know it would have been MUCH different and I would have had a baby, career and no where near the health issues I have today had I gotten to a specialist from the start...
You can challenge your insurance company...with information and proof that seeing a specialist will indeed save them money in the long run...

You may have to travel out of state...many of us do...my second excision surgery with a specialist (because of bowel involvement which would never had been had it been dealt with by a specialist from the start) but anyway...she was several states away...I flew to her and she gave me back my life...If the insurance won't cover it...or will only cover part (like mine did) you may be able to set up a payment plan...you would want to call the specialists and work out those details with them...
Do know the Lupron will temporarily shrink the endo but once it's done and you can't stay on it forever it will be back...so yes this is temporary and I hope and pray you do not get the bad side effects that so many gals end up having...It's not too late...you can still get better...but I would find a new dr. as the one you are dealing with now...had no clue about this disease and he will only make your life harder if you allow him to butcher you. If you tell me city/state I can tell you specialists closest to you!

[krchelle]

Thank you for your response.  I really appreciate your thoughts.  Honestly, you are not alone at all in your advice.  This tends to be the general consensus amongst endo sufferers.  

It's frustrating, because I just feel so...stuck.  My doctor feels very strongly about me starting the Lupron and has recommended no other treatment.  Basically this is the last resort before a hysterectomy, according to him.  He's essentially just buying me a couple of years before the hysterectomy.  He made no mention of cutting out the endo, or referring me to someone who can.  Just Lupron, then hysterectomy.  

I know from talking to sufferers, such as yourself, and through research that cutting it out is an option and probably the best one. So, how do I find someone who will do it?  As far as I can tell, there are no specialists at all in my area. I can't even find one in the next big city (about an hour away).  Is there a website that I can use to find a reputable specialist?  How do I know they are a specialist when researching one?  Are there certain credentials, titles, etc, that I should be looking for?  Unfortunately, traveling out of state is just not an option for me at this time.  I am a full-time preschool teacher, full-time special education major and single mother, and funds are pretty limited for me right now.  Also, my insurance will not cover out of state unless it is an emergency.  If you have any advice for finding a specialist, I would so appreciate it!

In the meantime, I did get my first injection this morning, so it's too late for me to not start it, but maybe it will at least buy me some time while I look for a specialist??  Hopefully.

Thanks!

[ipurr2]

Please see an endometriosis specialist...Lupron will NOT cure endo and is not a long term answer...it has ALOT of horrible side effects many times that do not resolve after medication is stopped...so even if you do the lupron you will still need to have the disease excised (Cut out) by a specialist...if your dr. wants to put you on lupron is he NOT an endometriosis specialist...all this drug will do is slow the disease down while on it...put you into a menopausal state and then once you come off the drug...the disease will come back and most likely with a vengeance...please don't waste another moment of your life with this disease in control...see a specialist so you can have your life back!