Advice/Opinions on my diagnosis

[AJackson123]

I could use some opinions/advice.

In 2014 my doctor was 98% sure I had endometriosis. Told me if I wanted anymore children that me and my husband should probably make a decision soon. We did. I had my son the summer of 2015.

Life was great for 3 months and then the pain started.

Like super bad cramps and stabbing pain in my abdomen. And not just during my cycle, but all the time and through out the day, even during intercourse. I ignored it for over a year and then finally went back to the doctor.

I finally had a laparoscopy done and sure enough I have pretty severe endometriosis and pelvic congestion syndrome and my cycle is abnormal, where my uterian wall sheds and instead of coming out it basically stays....

So now what. Well I can either medically shut off my ovaries with depo lepron because my cycle is causing the endometriosis. Or I can have another baby (not happening) or I can have a hysterectomy.(I'm only 23)  

The depo lepron can help my endometriosis but it can't help the pelvic congestion syndrome. The pain could still be there and I could have to take other medications for that. A hysterectomy won't even fix that.

I guess some advice or opinions would be nice cause I really don't know what I am gonna do.

Thanks for reading!

[BrittanyButterfly]

Finding a doctor that specializes in Excision surgery will help a lot. Do you have one in your area?

[ticked]

The surgery you had was that with an Endometriosis Specialist? If not it is possible that the disease was not properly removed. It would be good to know if the disease was excised out (Cut out) or ablation (laser) because those are two completely different methods and excision is the gold standard because it takes the disease from the root and ablation just gets the surface.

Also if it wasn't a specialist they could have left some behind not knowing where to look or too risky for them to remove, or they don't have the knowledge of endo like a specialist would have. This is crucial when treating this disease.

Some facts.

1) Having a baby will not stop Endo from growing
2) A hysterectomy will not cure endo
3) There is no cure for endo

So that being said the best form of treatment is still excision by and Endo specialist if your pain is still there as well as being worse since having your child. A lot of the time after having a child your hormones get out of control causing the endo to grow.

The only thing I would suggest is getting the surgical report from your last surgery, any tests you have had done since and find an endo specialist to get a second opinion or even some guidance to next steps. I can help with that if I know where you live.

One thing that worked for me was taking Marvelon a low dose BCP continuously stopping my periods and only having breakthrough bleeding every three months. I was on it for 8 yrs and it worked really well for me however this is not the same for everyone. Some people have the opposite effect and get migraines etc. Some medication may be good for some but not for others. I have tried Lupron 3 times and Visanne for 3 months and that did not help it made things so much worse however others have had success so it would be finding out what works for your body.

Eventually I did have a radical hysterectomy 3 yrs ago at the age of 37. It wasn't to cure Endo but more of closure for me due to everything that I had been through with this disease as well as cervical issues. I have a lot of information in my journals here in my profile if you are interested in reading them as well as I am active on Twitter, Facebook and instagram under @EndEndoForever (AKA #Thefacesofendo if you are interested in finding me. I can also help you find women that are in your area or even support groups if needed. There is a very large Endo community out there.

Please let me know where you are so I can send you some reputable names of some surgeons/endo specialists in your area.

Any other questions please feel free to ask :)