Post # 1
This is just a personal vent I don’t expect anyone to say anything I just am needing to clear my head and don’t want to talk about this with my friends or family.
Ok so I have had two medical issues going on for the last few years. About 1.5 years ago I was told that I have endometriosis and that if we wanted a child I should really try in the next 6-9 months. I told my dr that this wasn’t an option at the current time and I was put on birthcontrol to take away my period to help reduce the scaring and give me longer. The plan had always been that I would stay on this until right after the wedding since by that time it will be about 2 years since I was told 6-9months.
I also have a vascular tumor in my right leg. My vascular surgeon doesn’t want me on said pills and told me that it will increase my issues. Last year I had two surgeries for this and thought I was in the clear…..then came my 6 month follow up and I have two new growths. I have yet to send my vascular dr the scan results though and it has been several months. I am not sure why I am willing to share this info with the bee when I refuse to tell anyone else. I am not really sure why I don’t want to give him the results when I clearly should since the scans came back with two new masses. I know he is going to tell me that I also need to go off the pills. I tried to mention this a little the FH saying I can’t staying on these pills forever and he told me that he thinks I should stay on them for another year or two. I can’t keep this up though. The pain in my leg is starting again and I am just praying it is something I can put off till after the wedding.
Post # 3
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 # 4
@MissAsB Thank you. I might have to take you up on that offer. They didn’t do a laproscopy because my insurance says they do not cover it and said they only cover treating the symptoms. The dr said they came up with the details based off of a very strong family history and my symptoms.
Post # 5
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
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
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.
Post # 6
I hope you turned your scans in to your surgeon.
Post # 7
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
Oh yeah FH needs to understand this is putting you in danger.
Post # 9
u cant use condoms or other backup instead of the pill?
Post # 10
@hzleys100 The pill is used to reduce my symptoms for the endo.
Post # 11
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
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.
Post # 13
@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
@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
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…