So sorry this is so long. Desperate for help! (possible endo)

Hi ladies!

I have been looking through these posts for weeks now and my story is like so many others. Started my period at 11, I instantly knew this couldn't be right. The pain would put me in cold sweats and I felt like my intestines were twisting and knotted, I would turn white! I was told by my mom I was being overly dramatic and that's what my period or gas cramps felt like. So I sucked it up for years and at 16 during a visit to my ob (can't remember much from that appointment) I was told I had a cyst and it would go away by itself, absolutely nothing to worry about. Fast forward to 18 yrs old, I'm having episodes of extreme pelvic pain. I mean curl up in a ball because it feels like someone is stabbing me all over my lower abdomen and vagina with a hot pocket knife. My mom takes me to my primary care doctor, he says appendicitis and sends me to the ER. The ER runs test, I think an MRI and x-rays, then they tell me they can't find anything. Diagnosis- cervicitis. In front of my mother they tell me it could be an STD. ūüė≤ she took me to the ob a couple days later and they said I didn't have an std. I was feeling better by then so I went on with my life. I went back 1 last time a month later to my primary care, bad pelvic pain again. Diagnosis -spastic colon, he perscibes mild stomach tranquilizer. My mom never took me seriously again. Next I'm 23, still getting chronic pelvic pain but I don't bother going to the Dr. bc it's my cervicitis or period cramps I'm smoking pot to deal. Suddenly I'm stretching BAM! Excruciating lower back pain, I literally thought I fractured my lower spine, I find out later from a chiropractor my boss sends me to it's sciatica. Chiro says I have a curved spine, not scoliosis, and that was most likely the cause. I give him $40a week for a month then give it up. Still getting sparatic pain. I get pregnant at 26, hadn't been using any contraceptive for the past 4 yrs with my Fianc√© and assumed he was infertile. Felt amazing during pregnancy, one month after I quit breast feeding all symptoms came back, I had a 3 months period that was black like tar, broke out in cystic acne, gained weight and my slight facial hair was way worse. My boss said something to me about my face so I go to a Derm and he says PCOS and perscibes a testosterone (androgen) blocker, I've seen results in the 3 wks I've been on it. I had an appointment today with a new primary care and she doesn't think I have endo or PCOS. And she wants poop samples. I've had terrible, irregular periods, pain during sex, urination, and bowel movements plus the back and pelvic pain. 10 years I've dealt with this, it's made me depressed, antisocial, I have anxiety, insomnia now, and my fiance just told me he is no longer willing to put up with my medical problems and wants his life back. I dread the next flare up. What do I do?????

7 Replies

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  • Hi Hun I'm sorry your suffering like this. Where do you live?

  • I'm in the US, specifically FL. I see on here the best majority of women are in the UK.

  • Year this is a uk site but glad you found us.i don't know how things work in us but you need to ask for laparoscopy so they can see what's going on inside. It certainly does sound like endo to me. The only thing that will make any real difference is excision surgery. Look up Lindle on here she is a great help.

  • Is she a doctor? What I need to know I haven't been able to find online. I need to know if my nexplanon implant is the reason my pelvic pain has decreased. Or if my pregnancy cured my pelvic but it also started or spread to my back and hip. I had a very difficult C-section 12/12/14. My only pregnancy and baby. We almost lost him, the C-section took 5 minutes and every nurse in the room pryed my ribs open while my ob cut him out, still breaking his clavicle. Scared tissue would worsen with endometriosis, correct? I feel like I have endo outside the uterus but can't really get a doc to listen. They tell me I look healthy and I'm too shy to push any of them, they discourage me and I feel like they think the problem is in my head. My fiance and mother are tired of my pain and tell me if something was wrong the docs would have already found it. It makes it impossible to walk, I go to work and limp around, barely able to lift my leg. And because I have a 1 yr old and bills I go despite the pain, leaving everyone to believe I'm fine. Doctors here are terrible. I will look her up, thank you. And I do hope you get some relief!!! Good luck!!

  • I don't think she's a doctor but she's brilliant an so knowledgeable. Endo grows outside uterus. The implant will be helping wit symptoms.some women find relief while pregnant but unfortunately it doesn't last. I'm afraid you need to be strong and pushy with doctors. its time to take control and get the help you need. I've known since I was 15 that something was wrong but doctors wouldn't listen. I'm now 42 and things are so bad inside. I have no children because of this. On 3rd March I'm having hysterectomy (due to adenomyosis), ovary removal, excision and possible bowel resection. I really wish I had fought harder to get answers when I was younger.

  • Firstly, don't worry about your fianc√© - he's being very selfish and immature frankly. I'm sure you want your life back too. He's made a commitment to you and had a child with you - so really he needs to suck it up and man up!

    Now to what's most important - you!

    1. Start a symptoms diary immediately. Look at this website

    - write date in margin of a4 page and list of symptoms along top, each day you can tick whatever you feel. At the opposite side of the page have a column for where you are in your cycle (day 1-... , whether you're on period or not). I used highlighters to track in particular bleeding (pink) and upper gi pain (green) --> I highlighted each time I had bleeding ticked in the column for that symptom and likewise for the bowel trouble column - it then became apparent that I was bleeding for up to 2 wks each month and that I only had trouble with my digestive system when I was bleeding.

    - if you use excel it could be quicker to print out a table from there

    - alternatively just have a column for date, a column for where you are in cycle and then a section where you can document how you're feeling in more depth. I've done this too and looked back through highlighting symptoms to see any patterns.

    - having a symptoms diary gives you solid evidence to present to any doctor.

    2. Ask your gp (is this primary care where you are?) to refer you to gynae based on your symptoms. Pref an endometriosis specialist.

    (This is the link for uk centres- don't know if you are Aus or US but there will be something similar and specialists - Google online and try to find out, also find a local endometriosis group, maybe via Facebook or through a local Endo charity to talk to women there - the ones who've been diagnosed the longest and had the most surgery will be pros and can best advise you how to handle this in your area.)

    If they refuse you have two options firstly you can see a different gp, secondly you can pay about £150 to see someone privately - look at the list above and find your local Endo centre, write down the names of the consultants who work there, then find out about local private hospitals - it's very likely one of the consultants will work privately locally as well - then just ring and book your appointment. (Same kind of process will apply wherever you are - Google your local hospital and endometriosis specialist, then see where they work) If they see you and think that you need assessment such as laparoscopy you can go back to your gp with this and then get them to refer you via nhs. Sometimes the consultant will do this directly, just ask them what the process is if you get to that point. Hopefully you won't have to go private but gps can be morons.

    3. It may take you a while to get your referral organised. In the meantime read up on treatments for endometriosis be knowledgeable about what the hospital are likely to offer you and try to implement some of the holistic options yourself (see the Endo resolved website (link above) for all info re. Treatments)

    4. Don't panic. When you're in the middle of this it's intense and seems like no one is doing anything fast enough. That's unfortunately healthcare - it takes time to fight for what you need unfortunately. If you're feeling really ill a lot of the time, remember to rest as much as possible, accept your limitations - pushing yourself one day may mean 4 days completely out of the game so do what you can and forget about the rest.

    Hope you get sorted and def find the local women who will know exactly how things work as their advice will get you action faster xx

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