Re: Lung/diaphram endo and the pill?--Karin
From: Karin (anonymous@obgyn.net)
Wed Jun 30 09:12:27 1999
Hi Yen,
I'm glad those articles were helpful, but at the same time, I'm sorry
that they applied so much. I know this is very scary to think that we
have this disease in such an unusual area. The only thing that keeps me
from freaking out about it more is that it seems like the women in the
articles (and those mentioned in Dr. R's site) had the symptoms for
many, many years before they even sought help for it. I think with you
and I, this hasn't been going on for that long of a time (for me, about
6 months).
I feel the same way as you do--I just wish the problem would go away
because it's to scary to think about (especially having surgery done in
such an area). I've also been thinking for quite a while that when they
open me up, they're going to find endo EVERYWHERE! My last lap was in
1983 and I'm sure a heck of a lot of that stuff could accumulate in 16
years. UGH!
I've decided that I'm going to go to Dr. Redwine because he seems to be
the "bowel expert" and I've got a lot of problems in that area. And
according to the info on his site, he's also had quite a bit of
experience in diaphram endo (I'm not sure about the thorax endo
though...). I sent for his packet of info and I've just been waiting
for my new medical insurance to kick in before I begin the process. When
I talked to his office, I found out that he has a waiting list of
several months for scheduling surgeries.
I'd also recommend that you join the WITSENDO list. Every once in a
while a woman will write in with her experiences with diaphram/lung
endo. Also, that woman I told you about who just had surgery with Dr.
Lyons (and felt very strongly that she had diaphram endo) is going to
write up her surgery experience and send it this Friday.
Take care Yen--we'll get through this!!
--
Karin
At Wed, 30 Jun 1999, yenta wrote:
>
>Oh Karin,
>Thank you a million times for sending me those articles. They apply to
>me 100% -- I'm sure that is what is going on with me :(
>Karin, from your research, have you found which surgeon/surgeon group is
>absolutely the best to take care of this -- PLEASE
>It just all sounds so scary -- the symptoms, the surgery to take care of
>the extensive endo, etc. I just want to pull the covers over my head
>and make it all go away -- but it won't:(
>Karin, I'm scheduled to see a bowel specialist re the rectal/pelvic
>symptoms of last month -- but I now know I simply have endo EVERYWHERE
>-- I tried to tell my present gyn/specialist -- he isn't/hasn't been
>receptive --
>Now I feel like canceling the bowel guy -- after all, what can he do for
>me -- I have it everywhere!
>Yen
>
>At Tue, 29 Jun 1999, Karin wrote:
>>
>>Hi Yen,
>>
>>I just e-mailed you those two articles. Let me know if they don't come
>>through.
>>
>>No, I don't have a swollen lymph node or any of the other symptoms you
>>mentioned, except the rib cage pain and the slight shortness of breath.
>>Although in the past, I have had a pain right above the left breast
>>while breathing in. This almost always happened at night when I first
>>went to bed and if it happens, it's usually in the week before my
>>period. Strange!
>>
>>My main pains right now (in addition to the yucky bowel problems we've
>>discussed in the past) are in the inside, upper shoulder area. Sometimes
>>it also radiates down toward my elbow. It almost feels like I've pulled
>>a muscle or something. That's why I didn't think anything of it the
>>first couple of times it happened. I also have a phlemy (sp?) cough
>>right before and for the first two days of my period. I've never
>>coughed up any blood though (thank God! I think that would make me
>>totally freak out!) But it kind of makes me wonder what's going on in my
>>lungs during that time...
>>
>>I'm amazed that so many women on this list and others have mentioned
>>these same symptoms. I thought that endo traveling to more distant
>>regions like the diaphram, lung, brain, etc. was somewhat rare!
>>
>>Hope you're doing better,
>>
>>--
>>Karin
>>
>>----------------------------------
>>
>>----------------------------------
>>At Tue, 29 Jun 1999, yenta wrote:
>>----------------------------------
>>>
>>>Dear Karin,
>>>YES, please do send me the info you have re this mess -- I would really
>>>appreciate it:0)
>>>so do you have the symtoms I described in my post to Kelly? What about
>>>the swollen lymph node on the neck?
>>>Also do you have any answers to the remaining questions in my last post?
>>>Do the symtoms of breast soreness, lumpiness, largeness, weight gain,
>>>etc mean that my body is producing MORE estrogen or less?
>>>Thanks Karin -- I wish we could all be done with this --
>>>Yen
>>>
>>>At Tue, 29 Jun 1999, Karin wrote:
>>>>
>>>>Hi Yenta,
>>>>
>>>>I'm so sorry to hear that you're having so many problems right now. It
>>>>must be really scary to have such a degree of shortness of breath as you
>>>>experienced last week. I've never had it that bad--mine's more of a
>>>>increase in huffing and puffing after the most minor exertion.
>>>>
>>>>I was reading on Dr. Redwine's site that he does remove the endo from
>>>>the diaphram during his surgeries. It sounds like he has to do a
>>>>laparatomy to do this though.
>>>>
>>>>I wanted to let you know that someone e-mailed me a couple of articles
>>>>on diaphram endo and thorax endo. If you'd like, I'd be happy to e-mail
>>>>them to you.
>>>>
>>>>Also, another woman I've been corresponding to (I don't know if she's on
>>>>this list, but she's on WITSENDO) just had surgery last Friday and she
>>>>had many of the symptoms that we have. She's going to post her
>>>>experience to WITSENDO this Friday, so hopefully, she'll have something
>>>>to share that will be helpful to all of us who have these scary and
>>>>distressing symptoms.
>>>>
>>>>Take care of yourself,
>>>>
>>>>--
>>>>Karin
>>>>
>>>>At Tue, 29 Jun 1999, yenta wrote:
>>>>>
>>>>>Dear Kelly,
>>>>>Now I'm really getting scared -- my chest/upper back symptoms have
>>>>>worsened in the past month and I was hoping that it wasn't endo related
>>>>>(some of my pain is related to another injury). But now that I've read
>>>>>your post, I'm afraid it may also be my endo that is progressing. I
>>>>>experienced shortness of breath last week to such a degree that I
>>>>>thought I wasn't going to be able to breathe --
>>>>>My pains in the region are getting worse. Oh, and I had the familiar
>>>>>burping that would always come with that diaphragmatic pain which I told
>>>>>you that I thought was diaphragmatic endo -- Kelly, I think when the
>>>>>chest wall or diaphragm, maybe even bowel, inflames, it causes the
>>>>>burping -- it just always happens very consistently.
>>>>>So what do we do about it -- I'm scared I won't be able to breathe the
>>>>>next time. I went to an internist last week when this event occurred
>>>>>and he put me on meds -- the meds are almost finished.
>>>>>Also, new since being on the continuous bc pill (Feb), this past month
>>>>>my body has acted very strangely -- along with the above symptoms just
>>>>>mentioned, I had a strange sigmoid/pelvic/rectal flareup, my breasts
>>>>>have become large, lumpy and sore, sharp shooting pains in chest and
>>>>>around breasts, my body is expanding rapidly :(, etc.. -- I just don't
>>>>>know what is going on. But the shortness of breath is pretty
>>>>>frightening. Oh, I also experienced severe shooting pains down my
>>>>>thighs and back side in the past month in a half as well --
>>>>>
>>>>>I would love to get off of the continuous bc pill, but am afraid my
>>>>>symptoms may become even worse, I don't know but I will speak with my dr
>>>>>about this next month.
>>>>>How is it that you're not on the bc pill and yet your endo doesn't
>>>>>worsen?
>>>>>
>>>>>Does your chest endo still flare and when it does, does it hurt to
>>>>>breathe? Do you ever feel it in the upper back as well or only on the
>>>>>sides and front of chest and ribs?
>>>>>** BTW Kelly, do you happen to have a swollen lymph node on one side of
>>>>>your neck? Just wondering, because I've had such on my right side for
>>>>>the past few years and have read of other endo sisters having the same.
>>>>>
>>>>>*** Kelly, what can they do for it? What if it continues to
>>>>>worsen/spread? What did Lyons say should be done in such a case?
>>>>>I just reread your post re diaphragmatic endo excision -- I thought
>>>>>Redwine performed it --
>>>>>
>>>>>How are you keeping yours under control? Are you still adherent to your
>>>>>herbal meds and kickboxing? Kelly, what foods do you avoid for your
>>>>>endo?
>>>>>
>>>>>BTW do any of you know whether its the estrogen or
>>>>>??progesterone/androgens which make the breasts become sore, large and
>>>>>lumpy?
>>>>>
>>>>>Yen
>>>>>
>>>>>At Mon, 28 Jun 1999, anonymous@obgyn.net wrote:
>>>>>>
>>>>>>Karin,
>>>>>>
>>>>>>I read your post from the 25th and wanted so badly to respond sooner, but I
>>>>>>have been working out of town and haven't had a chance until now.
>>>>>>
>>>>>>I wanted to share my experience with you. I had my fifth lap in August of
>>>>>>1998 with Dr. Lyons at the CEC in Atlanta and at that time was diagnosed with
>>>>>>diaphragmatic endo. I also have endometriosis of the liver. The pains that
>>>>>>you are describing sound so familiar. I always had shortness of breathe,
>>>>>>sharp stabbing pains underneath my breast and around my rib cage and all
>>>>>>these occurred just before my period and during ovulation. Dr. Lyons did not
>>>>>>excise this endo because of where it was, and the risk of damaging the
>>>>>>organs, but he did remove the top layers with the Yag laser. In all
>>>>>>honesty, I still have the same symptoms and have not had any relief from the
>>>>>>surgery relative to my diaphragm and liver. I have done a little research on
>>>>>>diaphragmatic endo and everything I've read tells me its too dangerous to
>>>>>>try and excise from the diaphragm. As far as a treatment for it, I have none.
>>>>>>
>>>>>>I know I probably haven't helped you too much but I did want you to know you
>>>>>>are not alone and the symptoms are real.
>>>>>>
>>>>>>Take care of yourself and let me know if I can do anything for you.
>>>>>>
>>>>>>Lots of Love,
>>>>>>Kelly Tucker
>>>>>>Columbia, S.C.
>>>>
![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)