Re: b/c continuously - tara
From: D (anonymous@obgyn.net)
Mon Jan 8 08:07:25 2007
Hi Tara -
I'm so sorry - your doctor should have removed ALL of the endo that he
found - please do look into finding another doctor, your is not
up-to-date on endo. Lasering it off is ineffective - not only can the
laser damage organs, as your doc feared, the doctors can't go deep
enough with a laser, they can't be sure they've removed all the endo and
often only burn off superficial layers. Of course, that doesn't do much
if anything to help the patient! Lasers also destroy the tissue they
remove so there's nothing to biopsy, and they can leave behind carbon
deposits and cause more adhesions.
The better method for removing endo is excision - they cut it out. This
way they can definitely tell if they are going deep and wide enough and
getting it all. A skilled excision surgeon could have removed all of
your endo! They can also excise endo from sensitive places like the
bowel where they can't laser.
Most obgyns are not qualified to treat endo, they just don't cover it
well enough in medical school. Endo specialists work specifically with
women with endometriosis, and their skills and knowledge levels
concerning endo are off the charts compared to what a regular obgyn can
offer!
There's a good yahoo group for finding docs:
http://groups.yahoo.com/group/EndoDocs/
I also noticed in your reply to Erica that you are taking ortho
tricyclen? For continuous use without breaks for your period you should
be on a monophasic pill. Multiphasics are pills in which the hormone
doses vary over the three "active" weeks, they are supposed to help
mimic the monthly cycle more closely. The problem is that after the
three weeks, you are starting another pack, not having your period - so
there is no reason for your hormones to vary over those weeks. What
would be better is a monophasic pill that delivers the same amount of
hormones each day of the month - you are trying to STOP your cycle!
I experienced this firsthand with the doctor that first treated me when
my endo troubles started about 2 years ago. She put me on ortho
tricyclen lo continuously, and I just kept getting worse. It would
start off fine, then by the third week of the pack I felt awful, like my
period was about to start. Of course then I'd start the next pack of
pills instead, and never have my period, so I was "cycling" without ever
bleeding. I felt like every three weeks I was just bloating more and
more, with no release - it was horrible. Then I talked to a nurse
practitioner who was appalled that I was on that pill. She changed me
to Levlen, and things started getting better within a week or two. I
never got better "enough" that I could forget about it - I still needed
pain meds - but it was a lot better than that horrible bloated feeling.
Sorry, but your doctor sounds kind of clueless, like mine was! Please
get another opinion - more than one if you need to! I set up
appointments with several obgyns at once and went down the list until I
found one willing to help me go out of network to a specialist. We're
still working the insurance on that, it's not easy but I'm not willing
to settle for these docs who don't know what they are dealing with
anymore.
Good luck!
D.
At Mon, 8 Jan 2007, Tara wrote:
>
>D,
>That sounds about right. My surgery showed that I did have some growth
>inside the uterus but the most growth was behind it in the pelvic area.
>I think we didn't get a sure confirmation on the growth inside because
>we were trying to keep the surgery minimal as I am young and have not
>had children yet. But what he was describing to me sounds similar to
>what you have mentioned here. I believe he didn't put me on estrogen
>for longer because I have a history of migraines before I started taking
>any medication. I really appreciate the information, it really helps me
>understand whats going on with my body! I think the next step to take is
>see if I need to change the type of bcps I'm taking if this doesn't
>solve the problem. Thanks for the links, I will definitely look into
>it!
>
>I haven't looked into seeing a specialist on endo, but that is something
>I really would like to look into. I'll let you know if I find anyone! I
>think the reason I still have a lot of pain is due to the location of my
>endo--right against the wall of the uterus. They were afraid to laser
>it out because it might cause damage to the uterus, and of course it
>will continue to grow and build up. Perhaps a specialist will have more
>insight.
>
>Thanks so much,
>Tara
>
>At Sun, 7 Jan 2007, D wrote:
>>
>>Tara -
>>
>>I think I see where some of my confusion is coming from - endometriosis
>>is specifically when you have endometrial tissue growing in the pelvis
>>and elsewhere outside of the uterus. Not all women who have
>>endometriosis have problems with the endometrial tissue inside their
>>uterus, which is what it sounds like you are experiencing? And not all
>>women who have heavy periods and other uterine-related problems have
>>endometriosis.
>>
>>In any case, increasing estrogen will help stop the bleeding but it can
>>cause migraines. I don't think one week of estrogen would be long
>>enough to stop the bleeding - and it sound like it didn't. But your
>>doctor also stopped the hormones to give your natural estrogen a chance
>>to build up your uterine lining so it can stop bleeding (that's the
>>idea, at least). It's the progestin that makes you bleed, basically.
>>Different kinds of pills have different progestins as well as different
>>amounts of estrogen (which is always the same kind - estradiol), and
>>sometimes you have to try a few to find the one that works for you.
>>Personally, I have good luck with pills that have levonorgestrel but all
>>of the others I've tried have given me bad side effects.
>>
>>Here's a site that has lots of BCP info:
>>
>>http://www.wdxcyber.com/bc_home.html
>>
>>Have you considered seeing an endometriosis specialist? If your pain is
>>from endo you should have gotten relief if it was removed effectively -
>>it concerns me that you are still having such problems!
>>
>>Good luck!
>>D.
>>
>>At Sun, 7 Jan 2007, Tara wrote:
>>>
>>>D,
>>>Thats interesting--of course most of my information comes from my
>>>doctor. Yes the b/c pills are suppossed to help, but it still cause
>>>some problems..ie side effects. I didn't know that about estrogen, I
>>>will definitely talk to my doctor about that!! I tried not taking breaks
>>>but I have continuous break through bleeding and the cramping, nausea,
>>>etc I talked about. The way it was described to me is that the hormones
>>>can sometimes make women with endo levels "off" unless a break is taken
>>>from the pills. What happens is the lining of the uterus is at an
>>>in-between stage, which is different than what women without endo go
>>>through with their menstral cycles. I did have the surgery, and it did
>>>help a lot but I'm still having a lot of pain and problems. Thanks for
>>>the info!
>>>
>>>At Sat, 6 Jan 2007, D wrote:
>>>>
>>>>Hi Tara,
>>>>
>>>>I've never heard that women with endo "normally" get pms, nausea, etc.
>>>>from taking birth control pills - at least not any more than women
>>>>without endo. The pill is supposed to help with those problems! Women
>>>>with endo often do have those problems, but they are more commonly
>>>>caused by the disease itself and perhaps exacerbated by the BCPs.
>>>>
>>>>I'd be careful about increasing the hormones - the estrogen in BCPs can
>>>>cause migraines. It's not necessary to take a break from the pills
>>>>every 2-3 months, and since the breaks seem to bring them on maybe you'd
>>>>feel better without any breaks at all?
>>>>
>>>>Have you had surgery to remove your endo? I feel a bit like a broken
>>>>record, but having your endo excised by a specialist is the most likely
>>>>to bring lasting relief. Birth control pills help some women to some
>>>>degree, but few get excellent results - I sure didn't.
>>>>
>>>>Best,
>>>>D
>>>>
>>>>At Fri, 5 Jan 2007, Tara wrote:
>>>>>
>>>>>Hi all,
>>>>>I'm having the exact same problem that Erica has..its very intense all
>>>>>over pain, cramping, bloating, headaches, aching, ect. I usually can't
>>>>>work in this state when I have to take a break from the b/c pills. Again
>>>>>according to my doctor, this is normal in women with endo to have
>>>>>constant pms side effects, nausea, bowel related problems, cramping, and
>>>>>break through bleeding while on the pills. My doctor suggested going on
>>>>>a higher dosage of the b/c pills to solve the problem, so next month I
>>>>>am going to try that. Does anyone take pain medications to help with
>>>>>the pain? I also have severe migraines throughout the month, and its
>>>>>intensified when I have to take a break every 2-3 months and have my
>>>>>period. Curious if anyone else has that same problem. I've been on b/c
>>>>>pills for 6 1/2 years now. I was also just curious if anyone else has
>>>>>tried the higher dosage of b/c pills and if it helped. My doctor also
>>>>>put me on estrogen for a week to try to help with the severity of the
>>>>>side effects. Has anyone else done that? I'm not sure if it worked yet,
>>>>>because I was only on it for a week, and the break through bleeding
>>>>>didn't stop, so I'm on a "break" from all hormone pills right now--and
>>>>>paying the price!
>>>>>
>>>>>Thanks,
>>>>>Tara
>>>>>
>>>>>At Thu, 4 Jan 2007, Erica wrote:
>>>>>>
>>>>>>I was previously on cbcp for about a year. Yes I did have side effects.
>>>>>>I was frequently nauseous from time to time while on them. The bloating
>>>>>>I attribute more to the endo and bowel related problems. Breakthrough
>>>>>>bleeding was a big problem for me. I could usually go about 3 months
>>>>>>before I would start to bleed. An infertility specialist I was seeing
>>>>>>told me that this is very common that women often need a break about
>>>>>>every 3 months from the pill to have a period so the bleeding will stop
>>>>>>on its own. My problem was that when I did that my period was
>>>>>>excrutiating. I thought I dont' know if I could do that every 2-3
>>>>>>months b/c I was having to miss work the cramps and bleeding were so
>>>>>>bad. Then again everyone is different and you may not experience it to
>>>>>>that degree. Good luck.
>>>>>>
>>>>>>--
>>>>>>Erica
>>>>>>
>>>>>>At Wed, 3 Jan 2007, Shannon wrote:
>>>>>>>
>>>>>>>I am 48,and have endo..have been on the bc pill continously for 3
>>>>>>>months...are there any side effects that anyone knows of??? such as
>>>>>>>continous cramping..bloating...breakthrough bleeding... am really
>>>>>>>wanting to know..thanks..please someone reply...
>>>>>>
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