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diagnosed today

Posted , 4 users are following.

meghanb
meghanb

I have been in pain for a very long time. Mainly upper and lower back pain . I don't have abdomen pain though which leaves me hoping they are wrong.

I had ex rays done to rule out anything in my back amd it all came back negative for anything, I felt crazy wit all these symptoms and no tests coming back positive. I had an ultrasound done and they said "lining is thick" so it's likely endomitriosis but that it's hard to diagnose without surgery. None of this makes sense.

My symptoms are mood swings, painful sex, very bad back pain which was right before my period but now it's all the time. Stiffness to my knees, constipation, diarrhea.

Does ant of this make sense?

Can I still have kids?

Do cysts always happen? I don't know that I have had one..

I'm so sad right now..literally found out 3 hours ago.

0 likes, 18 replies

18 Replies

  • mel2016
    mel2016 meghanb

    Posted

    Hi meghanb,

    I ve endometriosis and my endometrial lining too was very thick.. I have painful sex too.. I think the docs are right.. These are the symptoms of endometriosis but no one can be sure till the time they do a laparoscopic surgery..

    • meghanb
      meghanb mel2016

      Posted

      Thanks for responding Mel 2016.

      Did/do you have back pain too? What did ypu do for it? Did you opt for surgery?

    • mel2016
      mel2016 meghanb

      Posted

      Years ago my symtoms were like yours with back pain and abdominal pain as well... I took contraceptive pills for 3 years... It was fine then but last year i left them to try for babies and it was the  biggest mistake of my life....i had such bad pain that i could not walk or stand or sit or do anything... I used to land up in ER every month... After going to docs for one full year and terrible pain i had my surgery in jan.... I do not have kids yet... May i ask ur age please
    • meghanb
      meghanb mel2016

      Posted

      I was in the hospital earlier this year twice for panic attacks from the pain. I was taking over the counter pain killers amd they make me anxious so right now I just take some advice and I take am Epsom salt every day after work. I use heating pads and have three different chairs at work. I felt crazy because they were telling me nothing was wrong. Chiro, massag or physio wasn't working. I'm so frustrated that they told me I'd have to be on the pill because I want to be pregnant in the next couple of years. I'm 30 with no kids.

      My mom said I was complaining about back pain since I was 12 bit they never found anything.. it's gotten really bad recently though.

      I really want kids and so does my boyfriend... I'm devestaded right now. I'm so scared about the future.

    • aitarg35939
      aitarg35939 meghanb

      Posted

      Hi Meghan

      Endo is terrifying, and so is back pain. I used to o lie down on a cool floor when things were at their worst in order to chill myself. Sounds weird but I'm not the only endo sufferer who's done it. Can't do this at work tho, and carpeting won't work, lol.

      Many women do manage to have children but others don't. Others like me never wanted them so many of us go straight from laparoscopy to hysterectomy.

      The bright notes I can mention are these: there is much more medical knowledge and awareness, and so many more treatments than there were in the '70s. Even brighter is the existence of this site. We all understand your pain and your fear, and we know that devastation, too, regardless of whether we wanted children. As to back pain as part of endo, I remember that I always had a bit of backache with my periods from age w/o onward. When I was a teen some simple back exercises helped; by age 24, they no longer helped. My backache were less severe than vg the abdominal pains, but itvaries with all of us.

      The one good thing about your diagnosis it seems to me is that now you know, and you no longer have to wonder what's wrong. I hope one day soon that it feels that way for you.

    • meghanb
      meghanb aitarg35939

      Posted

      Thank ypu. What sorts of things did you do for the back pain after 24?

      I lay on the floor, massage, stretch, baths, back exercises , heating pads, ice pads and pills. .

      I'm going to try taking put wheat and dairy, that's been suggested a bit.

      It's so frustrating that they can't do much for the pain.

    • aitarg35939
      aitarg35939 meghanb

      Posted

      Yikes, I pride myself on my memory but it's don't recall anything specific that I did for endo-related back pain past age 24. A series of docs gave increasingly stronger pain meds When that interfered with school & work, I stopped those since they weren't all that helpful for endo pains. Mostly I just kept seeking answers that didn't come til well into my 27th year.

      No help, I know. Does a heating pad help at all?

    • meghanb
      meghanb aitarg35939

      Posted

      Heat helps take the edge off a bit. Icee too, sometimes.

      I had one time where one of those gel ice packs took the pain away for 2 minutes and I thought I was going to melt away...but it didnt take long for pain to come back and ice no longer has that affect.

      I can't thank you all enough for your responses and sharing your experiences.

      I'm so sad that so many people have been and are feeling the way I am. I had no clue it existed.

  • froggy28
    froggy28 meghanb

    Posted

    Hi symptoms sound like endo and I'm afraid it doesn't show on scans so need op to diagnose. It isn't as bad as it sounds. I had severe endo but still had 2 children before I had the lot taken out later on (age 40). When I was in there were a few younger girls having endo deposits removed to try and help fertility. It really depends where the endo deposits are. I had my children in my 20 before I'd ever heard of it but it did take me a few years to fall pregnant first time but didn't think anything of it at the time. It was only when deposits had fused everything together did the pain get to point I had to do something but it was 5 years before I was actually diagnosed with a lap. I wish you all the best. Ps cutting out wheat and dairy can help some too.
    • froggy28
      froggy28

      Posted

      I mean the op isn't as bad as it sounds
    • meghanb
      meghanb froggy28

      Posted

      Thank you so much for taking the time to respond !!
    • mel2016
      mel2016 meghanb

      Posted

      hi girls,

                  Did anyone try any herbs to ease endo pain? there are a couple of things that I tried but i feel all of them made it worse except cupping.... Did any one try it? Its something like acupuncture... I did Cupping for two days and my following periods were really good - less pain , less bleeding .... but it lasted only for a month... You have to keep doing it consistently... I live in a town and no one here does cupping... the closest cupping place from my house is about 4 hours by drive so its not feasible for me to go that far specially coz i dont drive myself... But trust me , by far that is the only thing that helped me with my periods... 

      I also tried this herb called Endovan... It did help me with my bleeding and pain during intercourse but it made my pain during periods soooo baaad that even Morphine didnt help me with the pain... and I had such terrible adhesions that I am scared to try it again....

      For now docs have put me on temporary menopause, after my surgery... I hope we all get pregnant soon... and meghan I am 33 years old with no kids yet. :-( 

      I have a lot of pressure from my husbands family for babies.... it is soo bad that my marriage itself is at stake...  

    • meghanb
      meghanb mel2016

      Posted

      I have had cupping before. It was a long time ago and I can't really remember if it helped or not but it's worth giving a try.

      Thank you for sharing..and I am so sad you are going through this. I had no idea about this before.

      I have that same pressure. We aren't married yet but I'd feel awful if I was never able to provide children naturally for him because he always talks about how excited he is.

      Did the doctors say they were going to do anything to assist in pregnancy? Like can you do hormone therapy?

    • mel2016
      mel2016 meghanb

      Posted

      Hi meghanb,

      As of now I am on a shot which has stopped my periods.. Guess will have to consult a fertility specialist after I finish my course..

      I heard around 40 percent women with endometriosis do not have children .. And among the rest, many need assistance so I suggest u try for babies as soon as possible..cos pregnancy chances decreases with age..

    • meghanb
      meghanb mel2016

      Posted

      Mel,

      I went to my doctor today and they have put me on a naproxen which has started to kick in. It's the first time in..I can't even remember that the pain has been somewhat bar able.

      She is sending me to a Gyno to talk about what to do should we decide it's time to try and get pregnant but she recommended for now, to go on the pill to prevent the lining to thicken.

      She told me to try anything (like cupping) to try and find relief but said that she can't say one thing or another will help.

      She was however, very empathetic and told me to come back at any point even if it's to cry about the pain. She said she understands how long of a road this will be and that she will help me in any way.

      My heart breaks that women have been exeriencing this for so long and I have not known. My heart goes out to every single one of you and I hope that you all have a pain free day today. Xox

      Meg

    • mel2016
      mel2016 meghanb

      Posted

       Thanks soo much for your kind words Meg... It actually made me very emotional... None of my friends and relatives understand the pain I go through with every periods...  Every time some one makes a plan, I think about my periods date and my friends make fun of me for that... 

      Anyways lets not give up hope and keep trying till we get some relief... And Meg I really like your doctor.. I think her suggestions are good... U can try pills till u decide to get pregnant ... Also try doing yoga for ten to 15 mins daily...

       

    • mel2016
      mel2016

      Posted

       I wanted to ask u, how did u use Epsom salt?  and Did it help you? I read about it on internet saying it helps for Endometriosis.....

      Are u doing some thing for intercourse pain? I wish I had some solution to all my problems

    • meghanb
      meghanb mel2016

      Posted

      I run a pretty hot bath and use about 4 cups of Epsom salts...sometimes more if it's a bad day. I find the lavender scented ones help me relax. I usually do it right before bed too and it helps me sleep. My boyfriend says the lavender reminds him of his grandmother so recently I started using the vanilla scented ones hah

      If you're sensative to scent though, just the normal Epsom salts that you can get at most pharmacies or grocery stores works just the same...and take as long as ypu want in the bath. I usually read a book and try to use that time to relax. Try to avoid your phone so you can enjoy the moment when you don't feel pain.

      Also, if you're on your period I would still just get a bath and then shower after to clean off. It's well worth it. Becareful about doing it every night because the salt can dry out your skin but if you need to, there's no harm.

      As for the painful sex, I have not found any solution. Basically just going slow is the only thing that works. Certain positions are an absolute NO for me. It's a tough one because it just depends on the day really.

      I'm interested to see what you think of the Epsom salts. If you try it, let me know if it helps.

      As for your friends, don't let them get you down or make you feel embarassed. It's the way it has to be. Most women don't plan their wedding days on the day they are supposed to start their period..or a trip somewhere?! Makes perfect sense to me!!

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