Welcome to the endo forum.
I have a question for you. Have you ever been surgically diagnosed with endo or have you been on the depo shot and other period suppressed medications for a while? This is important because if you are not treating the disease through excision (cutting out) you are only using these meds as a band-aide.
Lupron is hit or miss with some people. I have met some that have horrifying side effects like you describe with hair etc. The medication is actually used as a chemo treatment for men with prostate cancer that is what it was meant for and somehow started to get used on women with fibroids and endo.
I have a journal of my Lupron experience in my bio if you want to look there and also on Hormones Matter website if you search Lupron it will give you many stories about ladies that have posted their experiences. Many of them I know.
Brown blood is old blood and I am thinking it possibly could be from a ruptured endometrioma. When was the last time you had an ultrasound of your pelvis? Do you have the report from it?
Hope this helped some.
I would ask your doctor if you can take Bioten. I know it sounds crazy but my hair was really thinning from hormones and my thyroid and the Bioten supplements reallly helped me. Everyone is different and their body chemistry is different so there is no definite answer if you will have horrible side effects or not. Myself I remember gain a few pounds and having a few hot flashes. I totally agree with ticked that brown blood sounds like old blood. Have you ever had any type of ovarian cysts? Definitely get a ultrasound of your pelvic region when you can. Wishing you well !!!!!!
Thank you guys very much. When I first started to feel the horrifying pain after sexual intercourse I told my old doctor she had told me it was normal and he was probably hitting a spot that was sensitive.
Now my period pain "when I used to get them" was never bad. But endometriosis runs in my family so that was my main concern, my old doctor took a look, and did an ultra, said she didn't see anything and put me on any old BC pill, this pill worked for me in the sense that I was getting regular periods, but the brown bleeding was still there as was the pain, the pill was just to keep my periods stabilized.
After 3 years I decided enough was enough and I needed a second opinion, I now see a doctor that has been in the practice for 45 years. He delivered me as a baby.
He's nothing like the other doctors and explained that the BC pill was just a mask to cover the real problem; showed me the ultrasound and told me it was insane that the last doctor (now out of the practice) didn't see this.
He suggested to not get surgery because he wants to treat this internally before he goes in and starts burning things out that could possibly save me from reaccurane of the Endo.
I just called my doctors office to speak to him again.
I am a hairstylist and this is terrifing to me, I'm already self conscious of my seriously thin hair, and to have to have this happen is devistating..
I do not want to start treatment on the Depo Lupron because I do know that when you lower your estrogen levels although it helps the endometriosis.. It hurts the growth of hair, substantially, I compare it to when woman are pregnant they have a lot of estrogen in their bodies with hormones raging, most woman's hair grows during pregnancy.
Then when they have their baby some woman start to notice hair shedding, this is because the hormone levels are not as high.
I'm not sure where to go from here, if I get off this medication my brown bleeding with commence, and if I stay on it my hair will thin..
Okay so let me tell you something right now. If Endo runs in your family and from you have said right here about the doctor treating you internally to save you from possible recurrence you need to find yourself an Endo Specialist.
If you have a direct relative with Endo you are 10x more likely to have it
There is no way to treat endo internally so I am confused by what he is trying to tell you because the only way to remove endo is from the root and that is with excision (cut out) surgery not burning. Your doctor is right when he said it mask the disease but completely wrong on everything else.
This is your body and you have the right to see a second, third or fourth opinion. Don't settle. This disease has no cure at the moment and yes the chances of recurrence is 20% if Excision is done but a lot of women find relief but you need a skilled surgeon not just some OBGYN. I can't express this enough.
Endo feeds off estrogen like cancer does so look at it this way. Would you want someone to "burn off cancer" or "cut it out" from the root?
Do not take Lupron unless you feel 100% good with your choice and I have talked to many women including myself who were told to go on this injection even before diagnoses which is not ok. What happens if you don't have endo and you took this med for nothing? This med was used and is still used as chemotherapy for Prostate cancer in men, it is not a normal drug and is exactly like what the birth control is supposed to do and does the same in masking the disease.
These are just my opinions and I don't mean to scare you but what your doctor has said to you scares me for you and it would be wrong if I didn't speak up.
If you need any other questions answered I am here. Please feel free to reach out or read my journals which also has a link to my blog.
You only get one chance to get this right and you want to make that first surgery count. Trust me. I have known many many women who have had their "endo burned" and I have seen many people report on having over 20 surgeries because that method does not help remove the disease just the surface.
Think of an iceburg.. Burning only takes the top, while excision takes also what is beneath the surface.
Thank you for responding.
My doctor is confident in this treatment. Why would this treatment be used at all for Endometriosis if it wasn't acceptable.
I'm not saying that by doing this all my problems will be cured and I'll be brand new, but what he's trying to do is stop my periods from occurring. Putting my ovaries into sleep mode, by doing this with the Lupron treatment, my constant bleeding will stop.
You have to understand that not only do I have Endo, but because of the consistent mis-diagnoses, and other birth controls to temporarily stop the bleeding, the uterus continues to create the lining that is causing me pain, that lining never stops shedding for me, when on Depo provera I bled right through that, yet it was brown blood, old blood.
Same thing with the nexplanon, all brown blood.
So along with the pain, I also bleed 24/7. We have checked for ruptured cells, we've done countless ultrasounds, and from the looks of it, this treatment is the best option for me.
I completely agree with you on the fact that "what if you don't have it, and you took this drug"
But odds are unlikely that I wouldn't have it with all the symptoms, and although Endo isn't completely visible in ultrasounds, we're confident that this is Endometriosis.
Believe me when I tell you that I appreciate your opinion with all my heart, that's why I'm here. In this forum.
And after 5 years of not knowing where to go or who to see, I'd like you to understand that trust in my health is not something I would put aside any more, or take just any old drug to make something temporarily subside.
Although there is no cure were trying to treat two things here the Endo, and the constant bleeding.
To some it may be another band-aid, but I've heard many positive woman with Endo have gone through this and it has helped. Then there are those that have horror stories you read all the time.
The internet is a dangerous but wonderful place to access information. I wish I had caught this at a younger age.
Thank you for your time and comment, I still have one more appointment with my GYN before getting this shot, and believe me I have a list of questions. :)
Also, we as a team decided to opt out of the surgery for more reasons than one.
The odds of it working over a period of time didn't seem likely, and I'm not taking any estrogen, my doctor and I have decided to stick with progestrin because we do know Endo feeds from estrogen, but in turn I'm getting side effects of hair loss because of the loss of estrogen.
I am a cosmetologist and I do know that it's a double edged sword seeing as hair requires some level of estrogen to grow properly.
You seem very very against the Lupron and I respect that opinion. It's important that I do, do something for my health including my mental health after years and years.
Hopefully this will help, but I'll ensure you, if I'm not 100% I will not settle. I think it's absolutley normal to be nervous regardless of confidence in the subject.
Thanks again :)
I am only here to answer questions and give you information based on my own experiences as well as others.
I was misdiagnosed for 14 yrs and I have been an endo advocate for over 5 and have talked to thousands of women on twitter, Facebook etc as well as top surgeons and top advocates around the world. I am confident in my knowledge as well as experience.
The gold standard of treatment for Endometriosis is "Excision Surgery" but I am not going to push you or tell you what to do, you will learn on your own as well as your own research.
It is not that I am against Lupron per say, I am against doctors using it as a diagnoses as well as treatment when they do not know 100% if it is Endometriosis. I have talked to lots of women and have only found 2 that were happy with the outcome. I am not telling you not to do it, I am telling you facts about the medication itself. There is currently a lawsuit going on against the makers of Lupron but again that is for you to research as you seem to know a lot and I think you are looking more for reassurance then advice. My friend is currently taking Lupron now and if you would like I could send you pictures of the clumps of hair that has fallen out being on it as I know your concern is your hair.
Good Luck on your Journey to find answers and a treatment.