My Diagnosis, Part Three: where there's a will, there's a treatment

12:31 PM

Here are parts one and two of my diagnosis.

Two weeks after my surgery, I kicked off New Year's Eve at my ob/gyn's office for a follow-up appointment. I, like everyone else, decided to sneak this in before my insurance deductible ran out, and so Andrew and I sat in a crowded waiting room, playing on our phones. I didn't have to wait long, but it felt like forever. I had been pouring over endometriosis message boards and reading articles all throughout our Christmas travel, and I was ready to get some answers directly from my doctor.



Dr. Carl called us in, and we started off by looking over photos from my laparoscopy. As expected, the endometriosis was concentrated around my left ovary and left side of my uterus - streaks of white on top of normal tissue. They had burned most of it off, and now, I had some minor scarring leftover. Dr. Carl categorized this as "minimal endometriosis," which I assumed meant Stage I but he admitted he wasn't sure how the stages were categorized.

We started to talk treatment options. Dr. Carl thought the continuous birth control I was on wasn't a good solution since I was still experiencing pain. So in his opinion, that ruled out the "birth control plus physical therapy" option we were considering. The next step would be Lupron, which essentially shuts down your uterus for six or so months and then reboots it, stopping endo production in the process. In other words, I'd be going through menopause - complete with all the side effects - at 24 years old.

I had done a bit of research on Lupron since I knew that was on the table. If you Google it, you will see it has two primary uses: treating endo and as a chemotherapy drug for advanced prostate cancer. I'm sure many of you are saying "lolwut" like I did...

My fellow endo fighters on various online support groups had the same reaction. I read words like "poison" and "nightmare" and "literally the worst thing ever" when looking for women's experiences with the drug. Some experienced bone loss, weight gain, hair loss and a myriad of other debilitating symptoms that made their lives worse than before the drug. Basically, I said, "Heeellll no" to this option.

I told Dr. Carl a bit about this, and he still pushed for Lupron. He said physical therapy wouldn't really help me, and this drug would be the next step in my treatment. Then he got into another topic I wasn't entirely ready to talk about: having kids.

Up until then, Andrew and I had decided we didn't want kids until I was 30. That would give us plenty of time to travel and be a young couple before settling down and having babies. But Dr. Carl said I likely wouldn't have this luxury anymore. Waiting five or six years to have kids might not be an option for me, and it would be a lot harder for us to conceive. Right now, it wouldn't be as hard.

Andrew and I looked at each other. We'd barely been married four months, and now, it felt like our five-year plan was starting to crumble. I got a little choked up and walked out of his office feeling like I didn't know what to do. Dr. Carl said this decision would be essential to determining how to proceed with my treatment, and he gave me some time to read materials and think everything over.

My husband and I talked for a bit that day and came to a decision. We weren't ready to have kids. If we couldn't conceive, we'd cross that bridge when we got there. But there wasn't a point in popping out a kid we weren't ready for. Dr. Carl himself said he couldn't predict how my endometriosis would progress, so why jump the gun and put me on a drug that would more likely than not make me absolutely miserable? Andrew even said he'd rather we have kids early than put me through that kind of nightmare.

Also, I was feeling pretty good, all things considered. I could still go to work, dance at concerts, travel for work (despite being exhausted) and enjoy my yoga classes. I was doing a lot better than many of the women I had talked to through support groups. I wasn't ready to consider Lupron as an option until I was unable to get out of bed or be a functional person.

So we decided on a treatment on our own, for now:
  1. Stay on the continuous birth control. Maybe now that my endo had been burned off, it would help minimize my pain.
  2. Go to physical therapy and continue with yoga. Yoga had started to help my pain, and maybe physical therapy would help more, despite what Dr. Carl said.
  3. Change to an anti-inflammatory diet. I had sort of done that after my ER visit a year ago, and that would likely help the pain in my stomach. It wouldn't affect growth of endometriosis cells, but it would at least manage the symptoms.
That's where I'm at right now. I'm currently searching for a physical therapist, and my diet has been helping so far. This is a good summary of what I've read about endo symptoms and food:



I'd already been able to tell that most of these foods upset me. Dairy, carbs and caffeine don't seem to bother me, but red meat always has (I'd already cut out beef), and saturated fats and processed foods weren't agreeable either. I'd already cut alcohol out of my diet for a while, due to being on anti-depressants, and I decided to minimize everything else as much as I could.

So now, I'm collecting recipes and cooking again, which I haven't ever really been great at. Andrew is the master chef in our household, but I think he likes that I'm actually trying to make dinner... Anti-inflammatory foods are good for him, too, since he has a history of arthritis and other joint ailments in his family. If you'd like to see my master list of anti-inflammatory Pinterest recipes, click here.

I will be using this blog to keep track of my food and yoga/therapy progress and see if I'm getting anywhere. If I don't feel like I'm getting better or if I start to feel worse, then the next step is to see an endometriosis specialist. Andrew and I are in agreement that Lupron will be a last resort. If it means we have to adopt or try some type of fertility treatment down the road, then hey, that's what we have to do.

What sort of endo treatment are you on? Do you agree/disagree with anything I or my doctor said?

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28 comments

  1. Thank you for sharing! I have pcos and I face some of the same issues. May God continue to keep you.

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    Replies
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  2. Thanks for sharing this - I have had nearly the same type of experience and had surgery this year at 28, with the same diagnosis at a level 1 or 2 endo. I didn't get the option of surgery until going to a reproductive endocrinologist when my OB/GYN wouldn't take the pain concerns seriously. It's shocking how awfully painful and disruptive even this lower rating of endo can be. I felt a great amount of validation after being diagnosed - like I wasn't actually crazy or just a weak person. It's good to share stories and I appreciate yours!

    ReplyDelete
    Replies
    1. Thank you so much for reading and sharing your experience! It's so disheartening to hear about other ob/gyn's who aren't taking their patients' pain seriously, but I'm happy you were able to have surgery. My current ob/gyn has been awesome about addressing my symptoms, but I know a lot of women out there with more serious cases haven't had much success. I hope you're feeling better and that you're getting the treatment you need!

      Delete
    2. I came to your blog from the Yahoo article as I was shocked to see a fellow Carmel lady writing for it! I graduated in 2005! Anyways, I also have endometriosis. Reading your diagnosis took me back through my own journey. It got me emotioal. I should have known all along due to my history of menstrual issues but it never came up. I'm dealing with a severe case where my only option is a total hysterectomy. I was lucky, however, to have 3 beautiful daughters before it got worse. In fact, it was a year after the c-section birth of my twins did I go in for the exploratory laproscopic surgery. After their birth, my health took a spiral downwards. I lost a lot of weight and ended up having my gallbladder removed. Things just seemed to get worse so my OB decided to do exploratory laproscopic surgery. I was told the same thing, that if there is anything that could be done, they would. I woke up to being told it was too bad, nothing was done. It was covering my entire uterus, ovaries, attached to my bowels and along my c-section scar, it all pulled together and stuck there. My only option was to take it all. I was 22 years old, a mother and being told that that was it. I ended up leaving that OB and finding another who has a totally different outlook on my issues. I've since dealt with ovarian cysts, uterine cysts, chocolate cysts and my latest was an almost 5cm cyst that ruptured. It's been pure Hell. I'd love another baby, my OB is positive I can but we've put it off for now. I was told about Lupron as well but unlike your OB, mine told me that's the last thing she wants to do to me. So for now, I do the birth control pill, exercise and diet thing. She has a 5 year plan and wants to even push the hysterectomy to 10 years. We'll see. It's a roller coaster. I wouldn't wish this on anyone. I'm sorry you've been through so much and also at such a young age. Thank you for sharing your story. I hope you and Andrew get that baby you want when you're ready.

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  12. Suffering from herpes is a Terrible Experience which i suffered till i meet a herbal doctor called Dr Atakuma. I tried Herbs from some Herbal Doctors by communicating with them but i never received cure.Just about few month ago i saw a recent post of how Dr Atakuma's herbs has cured so many people and that he is a honest man to work with in the procedures on finding a cure. Then i contacted him in trial and the Herbs he Sent me got me Cured after two weeks.I am so happy that i am free.my advice to the world please don't mind the scientific research only try and also believe is herbal medicine cause most disease can be cure with HERBS.here is the DR email dr.atakumaoracle@outlook.com dr.atakumaoracle@outlook.com
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  13. I was haven herpes 2 on my private part. I have had them for about 2 and a bit years. I am so scared what my mates are going to says if there should fined out i have herpes on my private part and due to the virus my girlfriend broke up with me. I have been to the Doctors 9 times to get it treated. They all come back. I have been using Tee Tree Oil and Wartner (You freeze them at home) and they seem to be keeping the smaller herpes small but they can't seem to treat the larger ones. They don't get any bigger, but then they can't shrink as much. They get smaller a little part at a time. At least they are getting smaller! As soon as I see a new herpes appearing, then I treat it. At the moment I have been using Tee Tree twice a week and then using Wartner every 2 weeks. I was wondering if there was any other information about how to get rid of it. I am only a teenager and I hate it most when it get pi-chins me to scratch it, it get sweets when scratching it most times! I want to get rid of it so bad! DR.OBA website has been a huge help and has helped me realize a lot more about me and my family of genital herpes! so that was when i switch for natural remedy to see if there could be any help by herbal remedy, i search and i saw a great posts by Sarah devise adebayo ehijactor and shanttel Merritt on about the great herbal doctor that get them rid of there disease infection. and this great herbal doctor was called DR.OBA so that was when i contacted him for my own treatment and he prepared me some herbs which i takes for some couples of days, and i take it as he says before i am to no me and my family was perfectly cure for it and never experience it again. please friends if you have herpes virus and you really wants to get rid of it, please contact this great DR.OBA for herbal treatment and you will get rid of it. EMAIL. drobaspellhome902@gmail.com

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  14. Hello all viewer online herpes has cure but doctor said herpes has no cure until i met Dr OBA who help me in my life. I was infected with Herpes Genital in 2009, i went to many hospitals for cure but there was no solution, so I was thinking how can I get a solution, so that my body can be okay. until this faithful day as i was browsing the net I saw a testimony on how Dr. OBA helped people in curing HERPES disease, quickly I copied his Email which is drobaspellhome902@gmail.com so i contacted him for solution for my Herpes, so Dr OBA told me that his going to prepare herbal medicine for my health,then he prepared the medicine and luckily after two week my herpes was be cured. Dr OBA is well recognize as one of the best herbalist doctor in Africa, you don't have to be sad anymore or share your tears anymore on this disease when the cure have already be found by Dr. OBA herbal medicine, he so cure HIV,CANCER, ALS,HEPATITIS B, DIABETIC ,or his WhatsApp Mobile number:+2348154692747

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    grateful to God for using Dr ojoka to cure me, that is the reason why i
    decided to write this wonderful testimony of our i was cured, i recommend
    Dr.ojoka to you all around the world,contact him on his Email dr.ojokarootandherbal@gmail.com or you can also reach him through thanks whatapp number +2348144172934
    dr.ojoka for helping me at this young age if you need help contact,
    He can also with your problem
    (1) herpes(2) hiv(3) als(4) dick enlargement(5) hepatitis B(6) ALOPECIA(7) CANCER,(8) DIABETES,(9) HERPES CURE(10) GETTING YOUR LOVER OR HUSBAND BACK(11) IMPOTENCE,(12) BARENESS/INFERTILITY(13) DIARRHE (14) ASTHMA

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  21. I have been suffering from (hiv) disease for the last four years and had constant pain, especially in my knees. During the first year,I had faith in God that i would be healed someday.This disease started circulate all over my body and i have been taking treatment from my doctor, few weeks ago i came on search on the internet if i could get any information concerning the prevention of this disease, on my search i saw a testimony of someone who has been healed from (Hepatitis B and Cancer) by this Man Priest Aluta and she also gave the email address of this man and advise we should contact him for any sickness that he would be of help, so i wrote to voodoosputuralspell@gmail.com telling him about my (hiv) he told me not to worry that i was going to be cured!! hmm i never believed it,, well after all the procedures and remedy given to me by this man few weeks later i started experiencing changes all over me as the Priest Aluta assured me that i have cured,after some time i went to my doctor to confirmed if i have be finally healed behold it was TRUE, So friends my advise is if you have such sickness or any other at all you can visit him on his website http://voodoospell.webs.com/

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  22. Do anyone still doubt natural herbs? I've seen the great importance of natural herbs and the wonderful work they have done in people's lives. I wonder why people still spend their money on surgery, injections and drugs each time they are sick. Natural herbs can cure all kinds of illness including herpes, diabetics, asthma, HIV, hepatitis, etc. I've seen it with my own eyes. I was cured of HIV and my aunt and her husband were cured of herpes by Dr. Baba Ogu who uses natural herbs to cure different kind of illness. Even Dr. Sebi prove to the whole world that natural herbs can cure all diseases and he cured countless of people using natural herbs. I know is hard to believe but am a living testimony. There is no harm in trying herbs. He is also a spell caster, he can cast a spell to restore your marriage back to normal, a good luck spell to prosper in life and excel in whatever you do in life. Contact or email Dr. Baba Ogu on: drbabaogu@gmail.com (phone/whatsap no): +2348137291215
    facebook.com/drbabaogucure/
    Youtube: https://goo.gl/zAoD1X

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  23. Am Lisa by name, i was diagnosed with Herpes for 3years ago i lived in pain with the knowledge that i wasn't going to ever be well again i contacted so many herbal doctors on this issue and wasted a large sum of money but my condition never got better i was determined to get my life back so one day i saw mr Brown post on how Dr Aba saved him from the VIRUS with his herbal medicine i contacted Dr Aba on his email address dr.abaherbalhome@gmail.com we spoke on the issue i told him all that i went through and he told me not to worry that everything will be fine again so he prepared the medicine and send it to me through courier service and told me how to use it,after 14days of usage I went to see the doctor for test ,then the result was negative,am the happiest woman on earth now. this testimony is real.thanks to Dr Aba God bless you. you can also reach him on his whatsApp number +2348107155060

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  24. I was cured of HIV VIRUS with the used of natural herbs, My name is Teresa Allen, am here to explore the wonderful and most safe cure for HIV&AIDS . I was positive to the deadly Virus called HIV for 17yrs, i lost hope. Until i searched online to know and inquire about cure for HIV&AIDS VIRUS and i saw Dr.Okalolo testimonies online on how he has cured so many persons from HIV&AIDS, and all kinds of illness and Disease. so i decided to contact the great herbalist doctor, i contacted him to know how he can help me and he told me never to worry that he will help me with the natural herbs which he did and he sent it to me via DHL and it got to me after 3days! i used the medicine as he instructed me and i was cured! its really like a dream but i'm so happy! that’s the reason i decided to also add more comment of Him so that more can be saved just like me! and if you need his help,contact his Email address on: okalolospellhome@gmail.com or WHATSAPP/CALL him on +2349067469342 .
    He also cure
    (1) CANCER,
    (2) DIABETES,
    (3) HIV&AIDS,
    (4) URINARY TRACT INFECTION,
    (5) CANCER,
    (6) IMPOTENCE,
    (7) BARENESS/INFERTILITY
    (8) DIARRHEA
    (9) ASTHMA
    (10)SIMPLEX HERPES AND GENITAL HERPES
    11) HE ALSO HAVE SPELL TO BRING BACK ANYTHING YOU WANT. E.T.C...... okalolospellhome@gmail.com or WHATSAPP/CALL him on +2349067469342 .

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