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Unread 03-22-2005, 12:54 AM
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My road to recovery has been down hill. My endo is back along with adhesions and I will be having a lap & colonoscopy 1st week of april. I can not tell tell you how disappointed I am. I feel as if I had the hyst. for nothing. And what angers me most is that I was put on (premarin) then switched to Estradiol. NOT GOOD! I wish I would of trusted my gut and went with out for awhile. But my DR. insisted I would need it, and the endo wouldn't come back. I knew then he was full of crap. He doesn't know enough about endo to treat endo patients. Most OB-GYN's don't know enough. I feel as if I know more than he does. Which isn't saying a heck of alot.
I've noticed him getting annoyed with me lately. He's more wrapped up in his OB patients! Well, I would have loved to have been one but thats NEVER gonna happen. GYN patients don't get the quality care that we deserve and it #[email protected]%%**^ me off. I hate to go to appointments and sit there waiting my turn and seeing pregnant women. It's so depressing & It just isn't fair. I wish someone could tell me why!!!!!!!! I hate this!Sorry
I just need to vent *punch*
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Unread 03-22-2005, 03:49 AM
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Awww Natalie;
I'm sorry to read that you are having more problems. It can be so frustrating.
Is it possible you can ask for the first appointment of the day so you won't have to sit in the waiting room?
I would think if the doctor/receptionist knew how you felt they would accomadate you.
Can you be seen by your primary care doctor?
I wish I had some good answers for you.
But, I don't.
I'll keep you in my prayers! Take care!

Unread 03-22-2005, 04:03 AM
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I am sorry things have been so hard for you. I know how you feel about the dr visits and the pregnant women, I cry everytime I see one, or a baby at this point. I do hope after your surgery, you feel much better, and I am wishing a more peaceful recovery for you this next time around!
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Unread 03-22-2005, 07:25 AM
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I know exactly how you feel! My TAH/BSO was Feb ’03 (age 23) (I had it for endo/adhesions) and now the dreadful endo is back. I ***** so bad. I decided to get a second opinion and stopped going to the group that di the hyst, I felt like they didn’t know what the @#$% they were talking about. I went to a chronic pelvic pain (CPP) dr and he said the other drs had me on more than enough estrogen to make the endo grow back. And now he took me off all estrogen but I was seriously going insane so they gave me a patch that’s only .025mg and will not give me anymore. But I also hav a bladder condition which is very painful also. I’m in pretty much constant pain.
The cpp doc said I will eventually have to have another lap but he wants me to try the low estrogen (to shut the endo up)and I’m on med for the bladder thing. In my opinion I think it would be a good idea to maybe get a 2nd opinion if possible since you’ve already had so many surgeries and especially since it sounds like you don’t have a lot of confidence in your dr. You deserve a dr who will give you his full attention and take your concerns seriously. And if he doesn’t know a lot about endo you definitely need a 2nd opinion. You can get on the internet and try to find an endo specialist or a gyn who specializes in chronic pelvic pain. Luckily there are a lot of good resources on this site about adhesions and more surgeries lead to more adhesions. There are many days I regret my hyst, I feel like you do, it did no good. But I can only imagine how bad my endo would be if I still had my femal “parts”.
And the new dr said that I can keep beating myself up about it, but it won’t do any good I just have to accept it and move on to the next step. Yeah right. Easier said than done, but that’s what I’m trying to do.
This is all just my opinion, speaking from experience (?I’ve dealt w/ endo AND doctors for 10 yrs) I have done tons of research on endo after hyst and will be happy to try and answer any questions you have. Feel free to email me antime if you want to talk. This is frustrating but know you’re not alone

Unread 03-22-2005, 07:43 AM
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You'll see from my signature info that I also have a prolonged history of endo. I almost gave in to the BSO last week, but decided on another course of Synarel instead. (Similar to Lupron but is a nasal spray instead of an injection ... to my thinking much more gradual and gentle on the system)

Unfortunately, there aren't any wonderful options for me without some sort of side effect - at this point. Lucky for me I have a wonderful gyn who is kind, compassionate and really tries to put himself in my shoes.

Even though I have as much trust for my gyn as I could have for any one human being ... I went to a renowned (published expert) in the field of endo (35 years of endo and fertility practice) and he said there was no question I would receive HRT after the BSO because of my age ... 38. I would have been placed on opposed estrogen (estrogen and progesterone .. .thinking that the progesterone would suppress the endo growth). The options he gave me were no different than my gyn had. So, I'm back in the care of my local gyn.

From what I have read... if your doc put you on unopposed ERT (premarin or estradiol), that probably was not a wise move. Have you considered a second opinion from a specialist in the field of endometriosis before your surgery in April? You can get names from the website for the Endometriosis Association. In my case it validated what my gyn said and gave me some peace of mind that everything that could be tried was being offered.

Lots of gentle healing s for you dear!! Let me know if I can help.
Unread 03-22-2005, 06:19 PM
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:burning: I am so sorry you are having these problems...and I sure do agree with you about the drs. I don't have the endo back, had adeno and tumors but my hyserectomy was botched, and I ended up dealing with awful complications which I noticed a real change in my gyns attitude when I had to see her due to follow up..she didnt even want to examine me...(hmm wonder why) and I don't even want to see her again...she sent me to the wrong uro ( who wanted to do a lot of un necessary surg) and I had a 2nd opinion with a great uro...who really expressed care and hope in my situation...hang in and prayers to you...I know how you feel, its a real let down feeling..from trusting drs with your life only to feel let down by them...I still get emotional... your hyster sister , vangoghs kat
Unread 03-23-2005, 12:08 AM
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Thanks yall so much for your support. It means alot to me. Everyone around me is trying to be supportive but they haven't got a clue as to whats going on in my head or the pain the endo & adhesions is putting me through.
I love my PCP dealry and trust him with everything I have. He said he is tryign to find someone with in the state of Louisiana for me to see. At this point he isn't confident in anyone that he knows. I see him on Monday & I plan on telling him to recommend someone at least for a 2nd opinion. My GI and he have given their 2 cents which is they think MY OBGYN is not qualified enough to treat me to say the least. Anyway,...I will check out the Endo. Assoc. ASAP; hopefully I can find someone close, even Mississippi would be worth traveling. At this point I am willing to go to ANYWHERE.
I have asked to have appointments 1st thing and still had to sit w/ OB patients. Not very long, but long enough. I guess I am being too picky, *****y, but nothing makes me happy. I am literally a miserable person. I'm working on not taking it out on others but its very hard. I guess you could say I'm bitter.
I want to say that I am happy to see that I am not alone but it honestly made me cry. It breaks my heart to know that this is common, and it makes me loose faith that there is light at the end of the tunnel.
Thank you sisters so much for listening and caring.
Unread 03-23-2005, 01:24 AM
so much like me

ive been reading this thread and i cant beleive how much of a mirrored saga......1yr. post hyst. the pain came back 2 months ago / w/ colon issues.after ultrasond and ct scan gyn is referring me to uppper gi n pain mng. pain clinic was no help, they ssaid they offer injections to people who have less generalized pain and my gyn cut me off pain med . 1 week before my next appt.saying she wasnt able to manage my high volume pain, said i needed to go see my primary doctor (who ive never seen before)the office person said i discussed this w/ a nurse BUT I HAD NOT. after being on scripts of vicoden and percocets for the last 3 months , written by her, iwas shocked when told this on the phone. just like someone mentioned i too sat for a 1 hour and 45min after my appt. time just to be seen by a student/NOT RESIDENT...who didnt even know whether i had blood tests or not but said all results were negative n she didnt think it was gyn related
Unread 03-23-2005, 01:36 AM
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its like they dont even want to see me I JUST WANT TO FIND OUT WHATS WRONG N GET IT FIXED
Unread 03-24-2005, 11:48 PM
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I feel so bad for you...please hang in there as best as you can...been through the trauma as well !!!Pleas don't give up..there is hope, and I am here as a living , breathing example of drs messing up, and then drs who put me back together with incredibe guidence and care ...I pray that things wil comeout fast and that you and your Easter will have a great time and eat after do whatver you feel will help you lots....vangoghs kat s

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