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Re: b/c continuously - tara
From: Tara (anonymous@obgyn.net)
Mon Jan 8 15:19:38 2007
Hi D,
This is such news to me! I defintely will look into finding another
doctor--I'm kind of in limbo right now because I'm without insurance,
but I think I may see if my primary can refer me to a specialist to keep
costs down. It makes sense that I am having so much pain due to my endo
still being there. He did tell me I still have a lot they couldn't get
out. (and sadly, I'm still paying that bill) I did have a lot of build
up near the bladder and near the right kidney that they were afraid to
touch. Thanks for the group, I will definitely find a specialist soon.
That also makes a lot of sense on why I am having so much difficulty
with the bcp I'm on--I've been on it for 6 years now, and no one has
ever suggested changing it to help my pain and symtoms. Thats about how
I feel on the ortho--the same exact ways. I feel like I'm having my
period every month even though I'm not, and sometimes I have
breakthrough bleeding anyway. I've been thinking for awhile that I'm
not sure my doctors know what they are doing, so I'm very glad I joined
this group to get some insight from women like you who have gotten
better care. Thank you for all your input!
At Mon, 8 Jan 2007, D wrote:
>
>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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