I have searched the entire web for a blog or a place that I could blog and hopefully get some answers. I about died when I found this website. I feel like my entire world has been turned upside down and so alone. Here is my story.
I am 24 years old. When I was 16 years old I was diagnosed with Endometriosis. I have always struggled with pelvic pain. It wasn't until this past year that my pain got bad. I had insurance through one hospital only. My obgyn wanted me to try Lupron. It was then that she went on maternity leave and wanted me to see just a regular doctor. He was actually really great. He put me on a low dose of pain medication and for once I felt like I had a life again. I was able to do what I loved to do. Of course it was all too good to be true because a few months later I lost my insurance. Thankfully my dad was able to put me on his insurance and I was able to see another doctor. It was like all the pieces had finally started coming together than I had to start all over again. Explain my pain, see several different doctors. The obgyn I saw said I needed to try physical therapy and would only continue my pain killers until I was able to get into the pain clinic. What a joke that clinic was too. They tried putting me on antidepressants knowing I had a really bad experience with them before. She finally agreed to do my surgery. I had my surgery 2 weeks ago. She said they didn't find any evidence that I had endometriosis.. After all these years and after all the stress of this.. They don't find ANYTHING!! They said it's Chronic Pelvic pain but yet they are putting me through another round of lupron!!! AND now they are taking the one thing away from me that I know actually works. It's such a low dose. I am not a druggie. I feel like that's what they think I am. I don't want to be in pain. I am at a loss and I feel so alone in all of this. I am doing physical therapy which seems to be helping a little bit. Not as much as I want it to though. I need answers and someone who can relate to this and advice as well..
Maggie
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I am sorry you are going through this. Have you tried going taking a natural approach for your pelvic pain? It's not an instant fix, but it's worth it in the long run.
I've had pretty bad menstraul cramps for as long as I can remember, but this year mid April was when the pain got worse, so I decided to go see a doctor, she gave me pain pills (which didn't work) & sent me to a gyno. The gyno put me on bcp with low dose of estrogen to see if that will help, but it didn't. Finally 2 months later, they agreed to do a laparoscopy on June 18th. They found massive endo & removed them all, but of course it may return. I've been having pain since, but it's more tolerable. I take Ibuprofen (800 mg) twice a day to "function." I was told that I'm in pain because my insides are inflammed, since they had strip/cut so many endo out. The gyno wants me on lupron, but I refuse. They also put me on cymbalta, which I tried once, but I felt like a zombie for 3 days so I stopped.
I usually don't take medicine..only time is midol/pampril for the time of the month. But from mid-April to June 18th felt like I took a years worth of pain killers. So currently I'm seeing a naturopathic/acunpuncture & pelvic masseuse to start healing, for example: changing my diet, taking natural medicine etc. basically reducing my estrogen dominance naturally.
I turned 28, and I'm taking the natural approach because I want my body to be healthy so me & my fiance can start a family. Our plan was to get married summer 2013 & then start a family, but since all this happened & there's a chance of infertility we're trying now & hoping for the best.
Also today is my first menstral since my surgery and I am in pain, but it's tolerable. I just took 2 max strength pamprin, so let's hope it'll help.
I hope you find a doctor that will listen to you, my prayers goes out to you & please keep me updated.
The things us women have to go through. I am sorry to hear about your pain as well.. It can be quite annoying!!! Thanks for responding. I had a post operation appointment with my doctor a few weeks back and she told me she did discover something. I don't have Endometriosis. I have Adenomyosis.
My doctor and I had this discussion. She told me to stop dwelling on finding out what is wrong with me and stop trying to find an answer as to why I am in such pain. I don't know if I should accept that, or if I should push to find an answer. One thing I have learned though and is that doctors are going to say things like "it could be very hard for you to get pregnant!" or such. I don't think you should dwell on that. It's incredible on how many ways a husband and wife can start a family. Also, if you aren't able to have your own. You should indeed adopt. We are given these struggles for a reason. We are meant to adopt children that need good loving homes.
I want to find one of these Pelvic Masseuse you speak of. Is it anything like Physical therapy?
It's been 3 weeks since I have had any pain killers. I am so happy to be off of them. Getting of them was not a fun time. Every day is different. Some days I will be in pain and some days I am pain free. I am taking a low dose muscle relaxer called Baclofen. It helps me a lot. Doesn't give me that high feeling or tired feeling. It does what its suppose to do and I can go on with my day. Also, I am on lupron. This is my second round of it. I think since you just had your surgery you should give it a try. It really does help and could help you get pregnant in the long run. Don't listen to what people have said about it online. It really does work! Plus, those awful period cramps and pains go away. Well, okay for 3-6 months any ways. Also, it helps prevent any Endo cells come back.
Thanks for responding and keep me updated on how you are feeling!!
Yes, it's very annoying!
Years ago my fiance & I talked about adopting after having our own children too so that's definitely in the books for us whether or not I can conceive.
I was googling endometriosis and stumble upon this website: www.endo-resolved.com & womentowomen.com. Both website is very informative on Endometriosis & Adenomyosis (as well as other women problems). There's alot of supportive women on there. I recently joined their forum page. I am sure you'll find lots of info on Adenoymsis as well!
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