Don't know what to do..

[lulu747]

Hey folks.  So it's Sunday night at 11;30 of the long weekend.  My man is out of town touring with his band.  I am in bed trying to rest but my lower abdomen is so swollen I look 6 months pregnant.  My lymph nodes in my groin are so inflamed I can barely walk.  It feels like a butcher knife is being stabbed in my lower back and upper shoulder.  I took my night dose of pain meds but it isn't scratching the surface and the pain is making me nauseous.  I sought help on the endo forum but it's so quiet over there.  I am debating the ER but don't think they'll really do much.  I am pretty sure nothing dangerous is happening, it's just I really need surgery and I am still waiting for a date.  What would they do other than pump me full of pain meds and I would lay in an uncomfortable bed in the ER?  Better to suffer here than there I guess. I see a general surgeon for a colonoscopy next week.  God I just feel so alone right now.  Thought if anyone was up they could just tell me a good joke, or tell me I can do this, or just something.  I don't want to call my family and wake them up and all my friends are out of town for the weekend.  I don't use this word very often but I really, really HATE this disease.  Need some hope. xo

[lulu747]

Hey thanks for checking.  I'm hanging in.  Bleeding heavily and lot's of pain but I saw my new doc today and am feeling positive.  I will get in for surgery soon.  If I have to call every damn day and remind them how much I'm suffering I will.  I see a general surgeon tomorrow about my bowel so we'll see what those test results show...My guess is nothing.  Pretty sure this is all endo and a surgery will fix all.  Hoping that the new dose of hormones will reduce the symptoms and help me a bit more comfortable while i wait.
Thanks for the love y'all
xo
Lu

[EvolverU]

How are you Lu?

I've been following your thread & am worried about you. (You're one strong lady, btw!) I pray that you find a modicum of relief from these terrible symptoms! I know that you mentioned that money was an issue but would it be possible to drive to Seattle for a second opinion/consult instead of flying? (I tend to agree with IBK & Sarah). Better safe then sorry, eh? I'm so, so sorry you're going through all this. My heart goes out to you. How're you doing today?

[lulu747]

Yes I've heard of that.  And I'm sure she'll check when she goes in.  She's very thorough.  I made it out last night but after two hours I was in tears and my boyfriend basically had to carry me to bed from the taxi.  It's awful.  He stayed up with me until 4 am.  I had to take an extra pain pill which makes me feel awful too because I'm scared that my tolerance is building already even though it's only been a month.  But then, I realize the next few days will be the toughest because I'm actually going to have a period for the first time in 2 months. Also, another thing that is worrying me is I've lost a fair amount of weight in the past couple of months.  I am always tiny but I've lost about 10 lbs. So I'm 5'3 and weigh 103 lbs. I didn't realize how much until I saw a girlfriend of mine last night who I haven't seen in 4 months.  When she hugged me she got tears in her eyes and asked what was wrong.  She said it felt like I was disappearing.
Ugh.
We're having family dinner to celebrate my birthday which is Wednesday.  I hope I can make it through without dissolving into tears.  But at least it's my family and they understand.  I am worrying about functioning at work this week.  I've explained to my students that I have a serious medical condition and am waiting for surgery and this is why I'm not able to be as physical with them in class as normal.  But the next few days are going to be really tough.  I may have to break my rule and take a pain pill before work, which I really don't want to do.  I wish SO much that I could just take some anti-inflammatories because I know they would help.  But i CANNOT risk a Crohn's flare on top of this.  I may have to go to the ER for a shot of Toradol on the worst day which should be Tuesday.  The IM shot doesn't really affect my gut.  I wish so much that I could get this prescribed for home.  Toradol is so good because it is so effective and doesn't make me feel altered at all.
Anyways I'm going to try to shower and dress now.  I've been laying in bed with heating pad being waited on but now I've got to get ready.  It is really lame that I cannot even muster the energy to wash my hair.
I will get through this, I will get through this, I will get through this.
Thank you all for your continued love and support.
xoxoxox
Lu

[jleeflcntrygrl]

Also I have same symtoms of lookin pregnant. I have polycystic ovarian syndrome. U may wana ask the dr if u could possibly have the same. Justa thought.

[jleeflcntrygrl]

I m so sorry .nothing showed up on my many ultrasounds either. My doctor-god bless him- knew somethin was goin on he opened me up at my belly button and did surgery. Then after 1 year my pain came back. Everytime I have my period I have to wear superplus tampons and a super maxi pad and I bleed threw both. I also have bloodclots the size of quarters or bigger. Its very painful. Prayin for u. And yes this is very scary but just want u to know we all care and are here.

[vicki595]

I feel better knowing you're being watched and that you're able to leave the house for a bit...I just hope you get to the other side of this soon. It's an awful situation to endure.  Keep in touch with us-  xo

[VICourageous]

Lulu..I am glad to hear that you have support right now. I too am a bit worried about all the bleeding..This took me way back to the 70s when I had to do those hormones..Sometimes to get some build up out and some to stop it. I am sure they have come a long ways now with more Medical knowledge. For me it messed me up so bad that I had to have a complete hysterectomy..So sad! Now I am suffering with NO hormones once again!! I am sending out some cyber Prayers for YOU..OH! How I can feel this..Brings back memories from the past..lol
Bless

[lulu747]

Hey Vicki I hear you loud and clear!  I let my boyfriend read your response and I absolutely promise that if my symptoms worsen or change I will get my buns to the ER asap.  I see a new GP on Monday who specializes in women's health and autoimmune issues so I am feeling hopeful about that.  I've been in bed all day with my legs elevated and now I'm popping out for an hour to see my man's band play.  I am spending the day with my family tomorrow.  I promise, I am being watched closely and in contact with family friends that are nurses as well.
Thank you for your tough love and support.  You have no idea how much I appreciate it.

xoxoxoxoxo
Lu

[vicki595]

Lulu- I'm really not convinced. Maybe it's the difference in medicine between our two countries. I don't know. When I hear (read) profuse bleeding, clots, weakness and lethargy, pain and the fact that you needed a blood transfusion in the past...I get concerned.  There's a lot of suffering going on and I really don't think that amount of blood loss is normal, even for endometriosis. You already said that you were bleeding rectally so this isn't all endometrial...

Im sorry you're going through all this and I hope it settles down soon. I'm doubtful but I hope I'm wrong.   I know you're doing your best given the limitations; stay alert to changes though.

[lulu747]

I'm okay ladies I promise.  The surgeon that I am under the care of is one of the top endo surgeons in the country, one of the experts in her field.  She trains doctors how to do surgeries that actually get rid of the disease and not just burn it off which causes permanent nerve damage and infertility.  I am bleeding profusely because my endometrial lining is shedding after being suppressed by hormones for two months.  It is very, very normal for someone with my condition to bleed profusely.  I've been going for blood work once a week and my hemoglobin is on the lower side of normal, but normal still so I'm not bleeding out or anything.  The next few days will be extremely painful and uncomfortable.  She wants me to get rid of the build up so that I can start new and hopefully get better suppression from a higher dose of hormones.  It is always a balancing act, because everyone's hormone levels are different- and I happen to have VERY high estrogen levels, so a normal dose is not enough to stop my bleeding.
The lumps and swelling is because my uterus is very inflamed from the disease.  This should subside after I have a normal period, and the new hormone dose will hopefully calm down the inflammation.  

I admit VIcki, it is difficult for me to think clearly sometimes because the pain is so great, and although I know the bleeding is normal for someone with my condition, it is very scary to lose a lot of blood.  It also makes me feel weak and lethargic.  

I PROMISE I am checking in with doctors regularly.  I see my GP Monday and a general surgeon about my bowel on Tuesday.  I am relieved having talked to my surgeon's nurse yesterday, and she said to call anytime.  They are monitoring me and if my symptoms get worse, then I will go to the ER.  It's just that at the ER they have NO idea what to do with someone in my condition.  Unless the bleeding gets so bad I need a transfusion (which has happened in the past) All they will do is pump me full of IV pain meds and give me yet another ultrasound which will show NOTHING.  I've had 4 ultrasounds in the past 3 months.

So, I'm sorry if I scared you.  My symptoms are alarming.  However, they are not abnormal for a woman with Stage 4 endometriosis and are nothing I haven't been through before.
My family and boyfriend are here with me.  I am being well taken care of.
It touches me that you all care and worry.  Thank you so much for being here for me and allowing me to vent.  The next few days will be rough, no doubt about it, but I have faith that the higher dose will calm things down.
Love to all...
Lu

[VICourageous]

Lulu..How are you today?..Come back we are very concerned.
I have to agree with Vicki here..
I too had all of this back in the 90s and had to have a surgery. I have had the endro most of my Life. I am really concerned here.
UPDATE GIRL!!!!!

[dominosarah]

I'm with vicki on this one Lu.....What are you supposed to bleed out?

Sending warm gentle hugs your way~

[vicki595]

"Bleeding profusely" equals life threatening lulu. Are you thinking clearly?  What would you tell someone who came to you for advice on these symptoms: Can't walk due to huge lumps between legs; excruciating pain; profuse bleeding etc...

"Stop hormones for 5 days and BLEED IT OUT" ???  That doesn't even make sense.  I'm really concerned about you. Is there anyone with you?

[lulu747]

Got through to my surgeon via her nurse.  They want me to stop hormones for 5 days and bleed it out and then start again at triple the dose.  I really hope this helps.  We agreed that since my symptoms are consistent with the endo, and not life threatening, it is best to try this and wait rather than receive less than stellar care at my local hospital.  Brave face going on, big girl panties being pulled up.
xo
Lu

[lulu747]

The issue is I just can't afford to go to Seattle...I called the surgery clinic and the doctor called in a scrip for another hormone that will hopefully stop the bleeding.  I guess the one I'm on is not working.  I was up all night until about 7 am, passing clots and am bleeding still.  I'm going to get the new hormone and see if it works.  If it doesn't I may need to find an alternative such as borrowing money and going to the States.  The thing is I really trust my surgeon, she is one of the best there is and she totally saved me before.  It's just the waiting.  I'll try the hormone and keep you updated.  Thanks Vicki.  I promise I'm being proactive.
xo
Lu

[vicki595]

What's going on now??   You need to get the hell out of there and get yourself to Seattle...you're way too sick to wait any longer for the surgeon and there are many surgeons available at the medical center in Seattle. Just get there!  I'm really worried about you...

[nonights]

Oh you poor child. Im so sorry. Praying for you girl. You need help from drs. Right now but I understand about waiting for good dr. Praying.

[lulu747]

And I just began to bleed profusely.  I am going to try to sleep and am going to the ER in the morning.  There is something very, very wrong.

[lulu747]

As for my diet?  I literally can't eat anything because the pain makes me so nauseous.  I've been eating low residue foods and mainly Pho (vietnamese soup)  I am losing weight rapidly.  I feel like a shell of my former self.  Plus the hormones are making me so weepy.  Or maybe the pain.  I thought detox was hard, but this may be harder.  Seriously.

[lulu747]

Vicki, Ariley thanks.
I am suffering something horrid.  I am currently swollen so I look 5 months preggers, have lymph nodes in my groin the size of golf balls, lumps between my vagina and buttocks and radiating pain down my leg so bad I cannot walk.  I literally lay in bed all day until the last minute when I have to get up and teach.  I take one pill when I get home, one before I go to bed, and one in the middle of the night when I wake up screaming in agony.  I have spent the entire week in doctor's offices.  The answer is the same:  I must wait for my surgeon.  She is back in office June 6th.  How the he&* do I wait this long?  On the other hand, going to the ER and demanding a rush into surgery could be the most tragic decision ever, since there is not a surgeon in my small town that knows how to excise endo properly.  I am in a very, very difficult position here.  It's not even about the meds anymore.  I am in trouble.  I don't know what I can do except travel to a bigger centre and demand care?  
Seriously, now that I can VISIBLY see the wrath of this disease and not just feel the pain I am over being stubborn about the pills.
My only fear is that I'll develop a tolerance quickly if I don't get into surgery quickly and then I'll have to take more to deal with the pain.  As it is, they are only taking the edge off.
It has been a long time since I've felt this scared or alone.  My man and family are totally feeling helpless to help me as well.  I crawl to the toilet at night.  I can't eat, I can't sleep.
I would not wish this on my worst enemy.
I go for a colonoscopy next week.  I know it won't show anything unless the endo has caused adhesions inside my bowel.  I know the only answer is surgery.  Please, please pray for me that I can get this surgery SOON.  I am so scared and I need it so bad.  I can't fight anymore.  I just can't.
Sorry for the rant....

[ariley13]

Lulu, from one sick gal to another ( suspected endo, ovarian cysts, and new diagnosis of diverticulitis here!), I feel for you and applaud you on hanging tough. Endo is so difficult to diagnose, and with you having a GI disease too, it just makes things that much more confusing and unbearable.  Please look after yourself and get treatment if you need it. There is no shame in pushing the issue and asking for help, even if it's just to get the pain under control. You should not be suffering like this every night. It's not healthy physically, mentally, or spiritually. We are all here for you and sending prayers and happy, healing thoughts. Stay strong, and quit being so stubborn!!  ;)

[vicki595]

Dear Best Actress in a Dramatic Role- How are you feeling?  You have a very painful condition there girlie...anything bowel related is excruciating. So are you taking that pain med more than once per day? You need to, okay? I'm sure you're watching your diet as well but you really need to cover that pain or you'll go nuts!  

[lulu747]

Hey Annie-

Thanks (:
Yes, I have Stage 4 endo and it's complicated.  They fear it has spread again to my bowel.  Unfortunately, I live in a smallish town without a good endo surgeon.  My endo surgeon is one of the best in the country and I have to travel to see her.  She is away until the end of the month so I can't have a consult until then.  I don't want to go to hospital here and risk a surgery with a surgeon who is not an expert, as they can do more harm than good.  So I am playing the waiting game.  I am bleeding from my bowel and going for a colonoscopy next week.  I also have Crohn's disease but am having no other Crohn's symptoms so they are fairly certain this is the endo.  The pain and suffering of this disease is just endless.
Though I had 3.5 years of relief after my last surgery, it is insidious.  And until I get the proper surgery and then hopefully conceive, I have to reconcile myself to this and try to live with it as best I can.  It's really hard, and really isolating.  I am reaching out for support in as many ways as I can.
I worked so hard to get my life back after all the surgeries and subsequent drug use and abuse.  It is terrifying to be going back down this road again as I am scared to lose everything I've worked so hard for.
But that is negative talk and I am refusing to listen to it.
Thank you for your words of support.
I'm off to bake a cheesecake, gather bday supplies and then go teach my teen class how to act.
If there was an award given for acting like you're not in pain when you are- I deserve an Oscar (:
Love
Lu

[EvolverU]

Hi Lulu,

I'm so sorry to hear that you're hurting this way! Do you know what your diagnosis is? I'm a little concerned over the general swelling, enlarged lymph nodes, nausea & pain. If this has to do with Endometriosis, maybe it would be best to get to an ER or see your OBGYN ASAP. A dear friend of mine has been going through something that sounds similar & she's at the Dr.'s right now. Please, let us know how you are :)