|
Re: current endo or ovary remant??
From: D.N. (anonymous@obgyn.net)
Thu Jul 31 15:29:51 2003
Lou,
Thanks for understanding why I didn't want to put my address on here.
Please feel free to write and vent anytime. I understand how
frustrating it can be. I hope you find an answer soon. Let me know
what happens.
Best wishes,
D.N.
At Mon, 28 Jul 2003, lou wrote:
>
>At Wed, 23 Jul 2003, D.N. wrote:
>>D.N.
>
>I understand about the address; that is why i hesitate to put MINE out
>there. I am still waiting on a call from my primary physician. Not
>been feeling too great the last couple days. Feeling pretty down also;
>this certainly doesn't help any. Have another call in to surgeon's
>office also. I will keep ya posted and thanks again!
>
>--
>Lou
>>Hi,
>>
>>This is an old e-mail address and I didn't want to put my new one on the
>>forum. If you would like to give me yours, I can write to you.
>>
>>I wonder why they want you stay on the HRT. That seems really wrong.
>>HRT feeds endo and makes it worse. Before you submit to surgery, you
>>should get another opinion. I am not saying that surgery is out of the
>>question but, I can't understand why they want you on the HRT. If I
>>were you I would ask for a better explanation as to why they want you to
>>stay on it.
>>
>>Please let me know if you want me to write.
>>
>>Best wishes,
>>D.N.
>>
>>At Wed, 23 Jul 2003, lou wrote:
>>>
>>>D.N.,
>>>
>>>Do you mind if i email you directly? I am new to this forum thing but if
>>>i am correct your email is listed? I did talk with a nurse today and she
>>>said that i have a "complex cystic mass on the left side" so i am STILL
>>>not sure about the cyst/mass distinction; i also asked AGAIN about the
>>>hrt and was advised to remain on them. past this everything else you
>>>have suggested they have also! She told me also what i had feared; that
>>>there is no guarantee that this will be the last surgery. again i thank
>>>you for all your help and guidance!
>>>
>>>--
>>>lou
>>> Wed, 23 Jul 2003, anonymous@obgyn.net wrote:
>>>>
>>>>Lou,
>>>>
>>>>I don't think the techs know much about ORS. I can understand your
>>>>shock, because I had the same thing too. I thought I was menopausal
>>>>because of the severe symptoms I was having. You and I are about the
>>>>same age. I have been very perimenopausal for the past couple of years.
>>>>In the past year, the hot flashes can be as bad as they were after my
>>>>last surgery. As far as what to do for them, we are sure limited. I
>>>>bought some sandelwood hand fans to carry and have a small fan in my
>>>>bedroom. The sheets are off and on during the night.
>>>>
>>>>ORS for me caused havoc both hormonal and endo wise. Up until the past
>>>>year, I had been ovulating regularly and having "cycles." After having
>>>>mono after my last surgery, I have a permantly swollen lymph node on the
>>>>left side that becomes very painful during a "period". That is where
>>>>most of my endo was in the sigmoid colon area. Hormonally, I think my
>>>>perimeno symptoms are a little more severe than the regular 40 something
>>>>woman going through it because I only have a small piece of ovary left
>>>>behind. I still have PMS sometimes. Sometimes it is PMS other times it
>>>>seems more hormonal level is either going up or down. If it stays
>>>>level, I don't feel so crummy.
>>>>
>>>>I think you really need to get off the HRT asap. Talk to you doc about
>>>>this. I thought that I would have severe symptoms coming off it, but I
>>>>didn't because the remnant was producing hormones. You might have some,
>>>>but it is hard to say. Being on the HRT would probably, but not
>>>>necessarily stop you from seeing if the pain is cyclical or not. I knew
>>>>I was ovulating again because I had that old familiar pain. Getting off
>>>>HRT might make a big diffence eventually in your pain because it is just
>>>>going to feed the endo.
>>>>
>>>>It is hard for me to say what is going on with you. I can tell you that
>>>>my doc thought at first I had a periotoneal cyst, not a functional cyst.
>>>>I took my basal body temp and recorded my symptoms everyday. That info,
>>>>plus my FSH and estradiol levels after going off HRT showed I wasn't
>>>>menopausal (even though a month after my surgery, my levels were
>>>>menopausal).
>>>>
>>>>My doc explained that if the ureter being constricted, I would have
>>>>abdominal pain that went around to the back on the side to the kidney
>>>>area. I have dull aches sometimes when a cyst is forming, but it is
>>>>just in the front. There are lots of nerves and it is all very
>>>>complicated in there.
>>>>
>>>>Again, I strongly recommend getting off the HRT and see how it goes from
>>>>there. Perimenopause/menopausal symptoms I know are not easy to handle,
>>>>but the pain of endo is worse, in my opinion.
>>>>
>>>>Let me know how it goes and I sure wish you the best!
>>>>
>>>>D.N.
>>>>
>>>>At Wed, 23 Jul 2003, lou wrote:
>>>>>
>>>>>At Tue, 22 Jul 2003, D.N. wrote:
>>>>>D.N.
>>>>>
>>>>>I had certainly never heard that ovaries could grow back but that is the
>>>>>info i received from the ultrasound techs; i must've been in a small
>>>>>state of shock because i just was not able to absorb the information
>>>>>from the doctor so i am not sure if he called this a mass or a cyst; i
>>>>>thank you for giving me several vital questions to ask! and yes i am
>>>>>still on the hrt (ANOTHER question!) and i honestly don't know if my
>>>>>symptoms are cynical. i didn't even know i had endo prior to last year;
>>>>>i am 43 years old and the trouble i was having with my cycles i
>>>>>attributed to my age? the hysterectomy was a result of a cyst/mass
>>>>>discovered during my yearly. i have been off the lupron 7 months and i
>>>>>don't EVEN like to think about getting off the hrt; need any input you
>>>>>have for the treatment of the menopausal symptoms. the hot flashes and
>>>>>irritability were a HUGE problem.... when you say ors can cause havoc
>>>>>do you mean pain or hormonal? i would SWEAR that i am still suffering
>>>>>from pms! i am really wondering about this flank pain statement also.
>>>>>last week i thought i had hurt my lower back? that started on sat; by
>>>>>sun. the pain was a dull ache from back to abdomen and then moved to
>>>>>pretty much abdomen only. wed. of last week my back ached again; i
>>>>>feel like i am either going crazy, have 2 seperate things OR it is all
>>>>>the endo? doc did say the mass/cyst could be pressing on nerves to cause
>>>>>this. what is your opinion, (and if you don't want to answer i
>>>>>understand!) do you think i have ORS or an endometrial cyst? i am not
>>>>>too sure if it really matters anyway? thanks again for all your help!
>>>>>
>>>>>--
>>>>>lou
>>>>>
>>>>>>Hi Lou,
>>>>>>
>>>>>>Ovaries can't grow back. However, having a small remnant of an ovary
>>>>>>can cause havoc. Remnants can also get a bit larger, but they don't
>>>>>>grow more follicles.
>>>>>>
>>>>>>I have ORS and endo after a hyst with left ovary removed and attempted
>>>>>>left ovary removal. My suggestion is first off, if you are still on
>>>>>>HRT, get off it and after a few weeks, have your FSH and estradiol
>>>>>>levels checked. Are any of your symptoms cyclical? When they did your
>>>>>>ultrasound, did they see any cysts or just a mass? How long have you
>>>>>>been off of Lupron? I understand your doc's concern about the uterer
>>>>>>because that is where my ovarian remnant is. They couldn't get all my
>>>>>>ovary out because of the endo and adhesions from the first surgery. You
>>>>>>need to watch for urinary symptoms such as infections, and pain in the
>>>>>>flank area.
>>>>>>
>>>>>>If you do have surgery again a laparotomy may be your best bet because
>>>>>>it can cut down on the risk of perforation to the bowel and they will
>>>>>>have a clear direct look at any endo left behind. If you do go that
>>>>>>route, I would suggest that you find either an endo specialist or a
>>>>>>surgical gyn oncologist and be competely bowel prepped (antibiotics,3
>>>>>>days mag citrate and enemas) in case of complications.
>>>>>>
>>>>>>I dealt with my remnant by trying continous birth control pills and
>>>>>>another time prometrium. Had to quit those because of side-effects. I
>>>>>>am very perimenopausal now and hope that I can make it to menopause
>>>>>>without further surgery. Another suggestion is that whenever you visit
>>>>>>your gyn, always have a transvaginal ultrasound, because that is the
>>>>>>only way they can see what is going on. A normal pelvic exam won't tell
>>>>>>much. You can see more of my story by searching under ORS or endo after
>>>>>>a hysteretomy.
>>>>>>
>>>>>>If you have more questions, please let me know.
>>>>>>Best wishes,
>>>>>>D.N.
>>>>>>
>>>>>>At Mon, 21 Jul 2003, lou wrote:
>>>>>>>
>>>>>>>i had a total hysterectomy with ovary removal 1 year ago. it was
>>>>>>>discovered during the hysterectomy that i had stage 4 endo; surgeon told
>>>>>>>me he was not able to remove it totally. i was put on 6 months of depo
>>>>>>>lupron; due to severe menopausal symptoms i did start hrt before the 6
>>>>>>>months of depo was completed. last week i experienced severe abdominal
>>>>>>>pain. an ultrasound shows a 3 cm mass on my left side; surgeon is of
>>>>>>>the opinion that it is the endo? i also understand there is a chance
>>>>>>>that it could also be an ovary that has "grown back"?????? has anyone
>>>>>>>else heard of such a thing??????? AND if that is the case what is
>>>>>>>responsible for my abdominal pain???????? surgeon wants to "scope me";
>>>>>>>he is "concerned" that he may not be able to remove this new mass thru
>>>>>>>the scope and says i should prepare myself for the full blown abdominal
>>>>>>>surgery that i went thru last year!!!!!!!! I believe he is of the
>>>>>>>opinion that i probably have disease again in my pelvic cavity; he
>>>>>>>seemed very concerned about the ureter tubes??? i need suggestions on
>>>>>>>questions for doctor before making this decision! pain is currently
>>>>>>>manageable with advil most days; darvocet works when it gets past the
>>>>>>>advil stage but i am fearful.......
>>>>>
|
|
![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)