Living with Endometriosis for 13 years

by Katie
(Hemingway, SC, USA)

I started having extreme pain with my periods almost from the time I started having my periods. I was 13 when I started going to the doctor for it, and I was 15 when they finally decided to do my first surgery.

My doctor decided it was time after I literally passed out from pain. They discovered the endometriosis and told me that if they hadn't caught it when they did, I would have needed a complete hysterectomy before I was 20.

They wanted to start me on the Depo Lupron shots after surgery but my dad wanted a second opinion and so I started going to another doctor, who put me on birth control. Just a few months later though, I was having even worse cramps and couldn't go to school or move.

The doctor did not believe I was in as much pain as I said. I had to have all kinds of tests before she finally did surgery. The build-up of endometrial tissue had pulled my uterus down and flipped it. I had to have a sling put in to hold it in place.

After this surgery, I went back to my first doctor who put me on the Lupron shots for 6 months, then started me on birth control again. However, a few months after I stopped the shots, I was back in the OR for an emergency appendectomy. The endometriosis had bound to my appendix and caused it to almost rupture.

I stayed on the pill for a few years after that and things seemed to be going well. However, before the start of my junior year of college, I was back at the doctor in extreme pain again. This time, my doctor referred me to a specialist who'd been dealing with endometriosis cases for many years.

He started me on Lupron again and after 6 months I was only getting worse. So I was scheduled for my 4th operation and stayed on the Lupron shots and a pill called Femara for 2 and a half years. I lost my insurance however and could not afford to continue on the shots or going to that doctor.

I also couldn't find a job and had to wait tables. Having a pre-existing condition I could not get private insurance. So I went to the health clinic and started on birth control. It didn't help at all but thankfully I got a job that offered insurance.

My mom wanted me to go to her doctor so I went and he started me on Danazol and Norethindrone, neither of which helped at all. I went back for a check-up where I was told that if I were able to wear make-up then there was no way I could be in as much pain as I said.

So I went back to the specialist and had my 5th operation in February. I'm now back on the Lupron shots, Femara, and a pill called Megestrol. I'm still having a lot of pain and honestly at a loss for what to do now, and believe my doctor is as well.

I know it's just a part of living with endometriosis but I'm ready to start living my life for me instead of around my pain. I don't know if this will help anyone because it is a little on the depressing side, but if so then at least my experience hasn't been for nothing.

I know I've still got a long road to go with dealing with this thing and plan to try some of the things listed on this website. Thank you for the support and good advice!




COMMENT

Name: Anonymous

Title: Sorry

So sorry for your pain. I started having pain at 15, 2 years after my period began. I was told at 21 to hurry up and have a couple babies because I was going to need a total hysterectomy by 30. I was 7 days short of my 31st birthday.

Along the way I discovered that I was the 3rd generation in my family to have the disease. My maternal grandmother who had a hysterectomy in her early 50s. My aunt who asked me later (around her 50th) is she should "have it all out". I said no. You have made it this far, see if you can stick it out.

My cousin who is 3 years older than I has chosen to live with the pain, gave up sex and lost her husband (likely as a result). I am happily married to a man who I was straight forward with from day one, in that I told him I did not want to have children. I would adopt, or we could get a surrogate, or be childless, but I was NOT going to pass this disease to another generation.

You are probably freaking out now saying WHAT?

Sure, someday there will be a cure. But I am 54 years old, had my surgery 24 years ago, and there is no better treatment now, than then. In fact, I am going in for surgery in 2 days - likely adhesions - from using just a little itty bitty amount of oestrogen cream - twice per week - in order to maintain my sex life.

I will not give that up. But I have had 20 years in between the last surgery and this, and I am grateful. For the most part, I have a life that is not filled with pills, shots, surgeries, doctor's offices and pain.

The only thing I would do different is to have had the total hysterectomy sooner. If you have a really bad case, that is just your fate. You can have a life, but you cannot have a life and your parts. And yes, I am still a woman - parts or no. I think like a woman and that is instilled very early.

I know you are fighting, but there is no cure. Do what you must, but unless something changes very dramatically and very soon, you are losing precious years of your life trying to fight a battle that cannot be won.

Please do not be depressed by this, though I do expect it will deliver some sadness. You need to look beyond being an endometriosis victim, and become an endometriosis survivor. Life will be different, but given the current circumstances - it should be better in many ways. Whatever you chose, know that you are not alone and every woman needs to work on her own schedule.

If you are not ready yet, then fight. But when you are ready, know that you can have a good life. I spent my 26th wedding anniversary with my husband in the Greek Islands. Never thought we would make it through the endo, or to the Greek Island - but surprise. And Monday, I will beat back the little bit that is left and have another 20 years of relatively pain free life.

Good luck!