(Closed) Health vent

posted 7 years ago in Wellness
Post # 3
Hostess
18644 posts
Honey Beekeeper
  • Wedding: June 2009

I’m so sorry for your problems.  Did they do a laproscopy to see how much endometriosis you have?  There are varying degrees, just because you have it doesn’t automatically mean that you are going to have a lot of problems leading to being infertile very soon.  Of course, I don’t know your personal situation but my doctors aren’t too concerned about infertility with me yet.  If you need to talk, feel free to PM me!

Post # 5
Member
620 posts
Busy bee

Cheer up.

First, endometriosis is common…maybe 5-10% of women.

Second, there are many treatments (at least 4 others) for
endometriosis besides the birth control pill. If you let
the two doctors talk to each other, they can choose
something that both are happy with. The birth control pill
(nor any other non-surgical treatment) does not increase
your chance at fertility so stopping it would not decrease
your chance. What your doctor is trying to do is keep the
endometriosis under control (help with pain and trying to
get tissue to fade away) so the topic of your uterus does
not need to come up. Not everyone will need to remove her
uterus.

Third, since you have not had your laparoscopy, they do not
know the full entent of the disease. Maybe they did an MRI
(or they are just going based on clinical symptoms and
family history) but the laparoscopy would definitively alert
them as to the extent of the disease. You can’t tell based
on how much pain. In fact it is often the less pain more
disease, more pain less disease.

Fourth-Once they do the laparoscopy, they can do ablation
(like burning) or removal of disease they find right there
(when possible), remove any endometriomas etc. and this
often improves pain and improves fertility. Make sure the
person is capable. Sometimes they just do a diagnostic lap
but it would be good if the person is ready to address
anything she/he might find there. From the severity, they
will also get an idea how hard it might be to conceive.

Fifth. It won’t bother you forever. After menopause you’ll
be good and if it is bothering you a lot before that and
you’ve had all the kids you want, they can just remove your
uterus.

Sixth. The idea behind part of the medical treatment is to
get the extra tissue to die (waste away) after months of not
being stimulated (and to help with pain).

Seventh – Definitely get the scans to your vascular surgeon
ASAP. The sooner the better with those things.

You are probably getting yourself down because you don’t
realize all the options. Sure endometriosis affects
fertility in general but you are a unique bee right? You
have options bee.

Cheers

Post # 6
Member
620 posts
Busy bee

@Nola:

I hope you turned your scans in to your surgeon.

Post # 7
Member
1404 posts
Bumble bee

I understand. I developed a massive blood clot in my leg from birth control.  Now I am high risk if I decide to have children and I am self-employed so my insurance sucks.  I would have to go on blood thinners during the whole pregnancy.  Just those meds alone will run me $36,000. 

Post # 8
Member
1404 posts
Bumble bee

Oh yeah FH needs to understand this is putting you in danger.

Post # 9
Member
160 posts
Blushing bee
  • Wedding: June 2011

u cant use condoms or other backup instead of the pill?

Post # 11
Member
620 posts
Busy bee

 

@Nola:

Remember there are other options to the pill as I discussed.  So are you planning to turn in your scans (if you haven’t)?

Post # 12
Member
620 posts
Busy bee

@Sunflower–girl:

If you can get on your husbands insurance, that type of thing would be covered.

You probably have some type of thrombophilia that predisposes you to clots when exposed to estrogen (unless you had a leg injury or was not moving your leg around for a time (like airplane).  This can be worked up.

Good luck

Post # 13
Member
1404 posts
Bumble bee

@Socrates:  He is self-employed too.  And it is probably genetic – my Dad developed PEs about 6 months after I was diagnosed.  He has 1 marker for May-Thurner.  My Grandmother on my Mom’s side also develoed DVT so there is a chance she has the other marker which means I could have both.  My dr and I decided against genetic testing – first of all it costs $5,000 and second, if insurance finds out I will never get affordable insurance.  Plus, she would still treat me the same regardless of if I had MT or not.

My SO says that my life is more important.  I have come to terms that a pregnancy could be very dangerous for me.  Still on the fence right now.  We’ll see.

@Nola:  Your health is #1 right now.  You have to take care of yourself.  I was scared when I found out about my DVT (and the ER said it was the biggest clot they have ever seen.  From calf to pelvis).  But I couldn’t hide from it.  You have to take control.  You can take steps to get through this.  Yes, when I started, it sucked, I won’t lie.  But it does get better. 

Post # 15
Member
1404 posts
Bumble bee

@Socrates:  And I was on a progesterone (sp?) only birth control pill…  But if you have any other info I’d love to hear it  🙂

Post # 16
Member
620 posts
Busy bee

@Sunflower–girl:

Progesterone can cause blood clots too but of course you know that.  I almost included that but modified my post to make it shorter.

With May-Thurner,  it is interesting.  It is actually an anatomic disorder.  The diagnosis if it wasn’t caught on your CT could be made with other imaging.  That’s pricey too though.  From what you are saying, your DVT was in your left leg right?  I’m not familiar with genetic testing for MTS.  Some have discussed assosiations with other thromopilias though.

You may not even have MTS.  There are so many things that could predispose to clots…some of which can be tested for and some brought up by history.  Each case should be looked at individually.  It is helpful if you find that there was a reason (such as not moving your leg on an airplane, injury to the leg, etc).  Sometimes a thrombophilia will be found and sometimes nothing. 

When your DVT was starting, did you ignore it for a while? 

Also your dad’s case may be different too.  I don’t like to guess because often the wrong diagnosis is made with the one clue method.  Knowing the WHOLE picture then putting it together in your head is the best way to make a guess.  People always leavwe out things that they think are not important but which have the answer…

 

The topic ‘Health vent’ is closed to new replies.

Find Amazing Vendors