Need someone who understands

Hello to anyone that reads this. I am 22 years old and I am rundown. I am in pain almost every single day and no one seems to understand. I have seen specialists and had 2 surgeries within a year, tried several hormonal and homeopathic therapies and nothing has relieved the pain. I bleed almost all the time, I'm exhausted. Often I have to go to the hospital just to get some relief but I hate going because they just think I am seeking drugs and don't seem to understand what endometriosis is. One ER doctor actually told me I was just confused about what period pain was. It is nearly impossible to go to school or work on a stable, frequent basis and my school won't recognize it as any kind of disability. I almost constantly feel stabbing pains and some days just rolling over in bed is too much pain. My boyfriend tries to be supportive as does my family but they just don't understand what the pain feels like. It's chronic and it is getting worse. I just want relief. I have had endometriosis since I started getting periods but wasn't sure what it was until I was diagnosed a few years ago. I am still so young and that is what is scary. I don't want to go through this for years and years and years. I have tried really hard to do everything the doctors asked. I went on the endometriosis diet and exercised and I've lost 35 lbs. I continue to eat well and exercise and avoid the foods they say causes inflammation. But I can't seem to get rid of the pain. I also seemed to not be able to stop bleeding. I wish someone would make it go away, I wish everyone knew about what I, and so many other women, are going through and stop just looking at us like we just can't handle period pains. It hurts to walk, it hurts to sit, lay and stand. Recently when I am bleeding heavily it hurts to breathe and I am short of breath. The pain goes from my back hip down my leg and hurts during intercourse, as well as after, usually for days after. I just want someone to tell me that they know exactly how I feel. I know it's unrealistic that anyone can give me an answer to make it all go away but I am tired of being so tired. My energy is gone, my hope is gone and the only thing that is a constant is the pain. Last Wednesday the pain was so unbearable I thought about breaking one or some of my fingers just to distract for even one second away from the endo pain.

I want to be back to myself. To have energy to do fun stuff with my boyfriend, to finish school and go to work. I want to act my age and enjoy this time in my life.


13 Replies

  • Hi there, I am 21 so a similar age.

    I was diagnosed last year, I know exactly what you feel like, I had the mirena fitted and went on the pill, all was great until January and.the pain has returned with a large cyst.

    What did your gynaecologist suggest? Mine is amazing so maybe it's worth seeking a specialist? My next lap is in a few weeks, I might have injections instead, I haven't really researched them yet!

    I suggest you go back and see your gynae, hey if you want to chat I'm Always a pm away :)

    Big hugs, your not alone xxxx

  • I saw a specialist in San Diego and in San Francisco and in Oahu. Two of them did surgeries, they all tried me on different injections and pills and mirena. Trial and error with treatment, just hope that something works soon. Thanks for your reply, it's nice knowing someone gets it :)

  • I've been on the mirena and the pill combined over a year. Everything was great until January. How long have you had the mirena? Mine took a good few months to settle at first.

    Sounds like you have been through a much worse time than me. Big hugs!!! I hope you find an end to the pain soon soon. Keep me updated updated! Stay strong xx

  • I'm old, but I still understand. (35 is old to you youngins. ;) ). I just had my second surgery April 15 2015 because I was still in horrific daily pain regardless of my Obgyn removing endo from the last surgery. Like it never helped the pain. I have been in near daily pain for the past 8 years. I have lived like a hermit during different parts of the years because my pain wouldn't allow me to go for walks or hang out with loved ones. I have noticed that I have pain cycles. Some years are less pain then others. I have tried 2 years of MANY birth controls to try and help the pain. Never helped. Some made me crazy, all caused me horrible side effects, and the Depo shot caused me 12 out of 13 months of bleeding daily. Yeah, THAT was fun. :/

    My work hates when I call off, and I am certain they thought I was making the pain up. My boss always wrote on my yearly reviews that I need to pick up more call offs. She was upset that I hurt too much to work my own shifts most of the time, let alone pick up OTHER peoples shifts. I usually hide my pain from my co-workers, but this past year I didn't. So they got to see how bad I really hurt. Seems they understand slightly more. I have had endo pain flare up at the same time as my IBS so many times this past year. THAT is definitely pain that you want to actually pass out, so I completely understand the wanting to break a body part. I can't take my heavy duty pain pill unless I call off work, because it is a narcotic. I tend to have to suffer with the day to day pain until it hits about a 4.5 on the pain scale ( I am from "the States" and we use pain scales), then I can take 6 ibuprofen (200 mg) every 4 hrs. Otherwise it is pointless to take the ibuprofen as it doesn't touch the lower pain days. Yes, I worry about my kidneys and accidently overdosing, but I have no other options.

    There have been several times I had to cancel on the guy I was seeing because my pain was so bad that I couldn't have visitors or go visit him. I have canceled on my bff's several times too. Any planning ahead I do has to have the words "If I feel up to it that day" attached to it. Even going for a mile walk hurts me for days. And I haven't exercised in eons. I love walking and have had to give up my trail walks.

    I have tried so many endo related supplements and non-medicine type things. Nothing works for me. I can't use heating pads or cold packs. I have tried eating magnesium rich foods and supplements for inflammation control. I have been gluten/wheat free for nearly 2 years now due to a wheat allergy on top of my other food allergies; legumes included in those allergies. Oh, and I wonder if the severe pain and your bleeding lots is related. I figured mine was. Especially with my depo shot. I bled all the time, which if you think about endo was bleeding that whole time too. I hurt a good percentage more while on the shot then when I wasn't on it.

    Now the mental part. I don't know where to actually to begin. I have days where I am so miserable because I am merely existing in my chair in the house. No life what so ever. All I do is work and sit in the house. And whimper. I hate the fact that some other endo women merely have pain the week before their period, where I have it every day (worse the day of my period). I hate that my sister says that I am no longer fun to be with. I hate canceling on plans that I really want to do. I hate that it took me 7 years to get a diagnosis as to WHY I hurt so badly. I hate that I have to take a medicine bag every where I go because I never know when the scary pain will flare up. But, I think on a whole I am doing ok coping with this. I have done better now that I have a name for my pain. Now I can research and try and inform others about my issue (learning to not overwhelm them with said info was also something I had to learn ;) ). I also like that I found this site and know there are others just like me out there. We are all learning new things to help us deal with all that is involved with this wretched disease. My family for the most part is very understanding, and it helps that we tease about my "owies" as we call them.

    Any time you need to vent or just talk, the whole site here is perfect for it. Welcome to the club. ;)

  • It is like you are writing everything that I am thinking and feeling. I carry my pain medicine with me everywhere and have it in ziplocs in multiple places in case I forget my purse. They tried the depo shots on me and it made me bleed, gain weight, get acne, be moody and let down that yet another thing didn't work. It took a while for me to be diagnosed as well and yet now that I am diagnosed there still isn't relief?!

    I am so happy to have found this site and appreciate the responses to my post I thought no one would ever read.

    Looking forward to talking to everyone more, especially one those tough days when I can't get out of bed

    Thank you

  • I know the doctors aren't 100% sure what causes endometriosis and it is suggested that it is genetic. Does anyone in your family have it? No one in my family has it or has ever described similar pain

  • No one in my family has it that we know of. So yay me for being the first. pthpppp....... :P

    There are so many theories that they have out there. I don't think they know the real reason yet, and it annoys me that there is very little publicity about this. Shoot even all my obgyn's in the past 7 years never guessed endo for me. But I must say in their defense, I am not text book case. But if they would have it in their plan b info for when plan a issues are all exhausted, maybe the women of the world would be diagnosed faster. Not that being diagnosed helps the pain and misery. It just puts a name to the "it's all in your head" diagnosis the doctors give.

    I just had a complete hysterectomy and left tube removal on April 15th 2015. My best friend was excited because she has been reading up on endo too (love bff's!!) and she believes in the retrograde theory. I personally believe in the when you are being put together as a baby, the cells have issues theory. Plus, I have terrible allergies, environmental and food. So I think my autoimmune system is pretty wonky which allowed the cells to really take hold.

  • Aww darling I feel for you and I'm so sorry to hear your story, this group is brilliant for support and gaining information. I too have to deal with exactly the same as you except the bleeding, I currently can't sleep due to my leg at the top feeling numb and pulsating then shooting pain right down to my toes.

    Message anytime you want to chat.

    Sending hugs


  • Sorry forgot to mention I'm on the depo injection and don't bleed, I had 7 months of hormone injections which worked I was Pain free, so now waiting for a hysterectomy (I'm 31 and have 2 kids)


  • Oh you lucky duck! I bled 12 months straight out of 13 months on the shot. I had the weight gain and cystic acne as well. I will say that the only good thing from the shot was my pms was gone.

    Oh, and every time I got the shot I would have a week's worth of headaches, a panic attack, and SEVERE leg and back pain. Like felt like my knees were going to pop put of place, and my lower back kept getting air bubbles in it and hurt sooooo badly. I thought about it, and DUH!! Your body is thinking it is having a baby. So I looked it up and yep, these are pregnancy related issues. I stopped my depo shot March 18th 2015, and mid April my pains started to clear up. My back doesn't have air bubbles or hurt, my knees and legs feel great. The only bad part is the cystic acne is coming back because my hormones are trying to regulate again. oh, and I am scared for my first real PMS day.

  • Napro, will help. Please google it. I think that your best best is to speak with dr. Phil Boyle over Skype as he is in Ireland. They gave me my life back. The number is 00353 12933816. Speak with his secretary she will help you out. Best of luck

  • Hi - I am so sorry you are going through so much. Click on my username and have a look at my posts on endo and its many symptoms and the Pouch of Douglas one. Also on adenomyosis. The symptoms can be very similar - have you had that checked out? x

  • I don't have anything to say that will help other than I know how you are feeling. Constant pain is wearing. I'm another pill carrier - paracetomol, ibuprofen, co-codamol in 2 strengths and 2 strengths of Tramadol go everywhere with me just in case. I had 2 painkiller free days on Thurs and Fri and was feeling so much brighter. Then about 9pm sudden blinding screaming pain from nowhere. Hottie and Tamadol and 2 hours later it was down to a reasonable level. I was planning on going a gentle walk today but that's out now. I totally understand the work to couch thing Aarvarklips was saying as often that is all I can do. I am waiting for a laparoscopy and am hoping that helps but it looks like I have about another 16 weeks to wait, and I will have to wait after that as I have a family wedding and holiday set up so I am looking probably September. The only thing that helps me is just trying to make the best of good days and trying not to beat myself up when I have a bad day and end up in a painkiller haze in fron of Netflix.

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