I cant take it any longer

Posted , 4 users are following.

I am currently 18 years old. I have been suffering with symtoms of endometriosis for over two years. Saw multiple doctors but was always turned away of given some completely irrelevant diagnosis such as constipatation. I finally got in with a highly recommeneded women's health doctor in my area. I was firstly treated for Pelvic Inflammation Disorder. If anything my sytoms became worse while undergoing treatment, so badly I took myself to the ER. After having an ultrasound it was clear to this new doctor what was going on. She 'predominataly' diagnosed me with Endo (what i suspected all along) but wont do surgery because I am still 'so young'. I have been suffering for long enough! I have spent endless amounts of money of tampons and pads, new bed sheets, clothes, plus ultrasounds and medications. I am so tired (have an iron deficiency from losing so much blood) and drained, plus emotional. I am so over this and so over being told that surgery isnt an option. I know once the endo is found and burnt off it can 'grow' back, but it would give me such peice of mind to have to operation. Unfourtunatley nobodt will listen to me or take me seriously. I have been put on a new pill, Zoely, to help regulate my period and calm the pain from the endo, but I dont see it as a long time solution. Has anyone ever been in a similar siuation as me, where nobody is willing to listen to you about endo just because of your age?

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  • Posted

    Hi Amy,

    I feel your frustration although your lucky you found this out now rather then trying to fall pregnant and finding out the hard way like I did. I reckon you should really push to get this operation done as the endo can keep growing and tie your tubes or ovaries together. Im not trying to scare you but in some cases if left untreated for too long it can cause more problems. I had blood filled cysts and my tubes were tied and ovaries stuck and I'm 25 years old.

    Take it from me get the operation done. My family friend found out she has endo when she was young and single and probably younger then you and they operated on her and removed it. Now she has 4 beautiful kids.

    Good luck

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    • Posted

      I totally agree with you! Just feel like nobody wants to listen to me because I am younger. I've even tried taking my mum to appointment as a more persuasive figure but it doesn't seem to work lol. I have seen multiple doctors and all have been a no go. The doctor who has predominately diagnosed

      Me said if pain persist after trying this new pill to come back and she will 'surrender'. To me, this new concraceptive pill will mask the pain and ease the pain and periods but it obviously will not stop it. I don't see any point so I will be going back.

      I don't know if Yu are a big believer in these things, but I saw a physic a couple of months ago. She told me I was going to be diagnosed with endometriosis and have surgery in September (she knew nothing about my situation). Guess time is ticking lol.

      Thank you so much for your help and kind words x

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  • Posted

    Hi Amy -- I'm sorry you're suffering so much. That's awful. I don't care how old or how young a person is; suffering needlessly is just torture. 

    I too saw several Doctors, and was told my pain might be due to IBS, constipation, irregular periods, kidney stones, ovarian cysts (that repeatedly burst and then came back). Only one specialists that I consulted with minimized my symptoms, and I believe he thought I was simply drug seeking and malingering. All other providers were helpful in the sense that they ruled a lot of conditions OUT but nothing definitive IN. Of course, as you know, Endo is only truly confirmed through surgery. Once I referred myself to an excellent OBGYN in my network, it was a new experience entirely. We worked very well together and she always listens to me -- never minimizes my concerns, never rushes me, never pressures me into trying something I'm not comfortable with. We finally found a continuous birth control therapy that worked wonders for me for...at least a year. This of course was after successful surgery to remove several Endo "implants" as well as an ovary that was in terrible shape giving me grief every other month. Unfortunately, as of recently, my hormone therapy has begun to fail on me in epic proportions. I may eventually be looking at full hysterectomy (incl. remaining ovary) to get myself back to a Stable condition. 

    Is there anything preventing you from seeking a second opinion from another OBGYN specialist? It never hurts to have another set of eyes on the case -- someone else may be more willing to surgically treat you, or suggest a better hormone therapy to reduce your symptoms (or both, I would hope). 

    Is your DR hesitant to perform surgery because you're asking for a full hysterectomy? I'm not clear why "you're so young" = having surgery to treat your Endo isn't in your best interest...? Maybe your current Dr isn't a surgeon? I believe there are OBGYN's who are not also Surgeons and refer their surgical cases to other providers they trust.

    Suggestion: Do seek a second (and third or fourth if you want) opinion. Doctors are still human; they aren't perfect and you may find you're happier working with someone else to find relief. Do some research online to find the best OBGYN Surgeon in your area/in your insurance network and read reviews on every site you can...ask your friends/relatives if any of them have suffered from Endo and if so, who they see for treatment (and who they avoid too). 

    There are excellent doctors out there but it might take some work to find the right doctor for you. Don't give up and don't let anyone make you feel like you don't know what's best for you. 

    (I'm in America so all of this is relevant to me as far as networks, finding new providers, etc -- are you in America too or another country?)...

    Don't let this make you feel helpless -- I know it's hard to believe right now, but this too shall pass, one way or another. And you always have options.

    Best of luck Amy...

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    • Posted

      I was told my pain was due to the exact same things as you! I was out on laxatives to treat IBS, I've had multiple cysts (currently have 10 on my right ovary and 9 on my left) and was also treated for PID. The doctor I am currently seeing is hesitant because I am so young and she doesn't want to put me through surgery. I think what she was trying to get at is I am not ready to have children yet so there isn't much point, but I don't see it that way. She said if the pain persists for a couple of months to come back to her and she will organise a lap, so I don't understand why I can't just have it now . The doctor I am seeing at the moment is gynaecologist, but I am considering seeing someone else and pushing for the operation.

      I am in Australia but it your information does have relevance to me.

      Thank you so much! It does get me really upset and worried about many different things, so your kind words have really helped smile

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    • Posted

      I'm Australian too smile

      I was only diagnosed with endo when I couldn't fall pregnant and the ultra sound showed I had a 8cm cyst in my ovary. When they went on to remove the cyst they found the endo. I had no symptoms sad

      The lady above is right. Try getting a 2nd or 3rd opinion. "Too young" is no an excuse to not treat endo. I wish I had the symptoms at your age and knew all about endo so I couldn't done the op earlier and not go through what I went this year.

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  • Posted

    Hi Amy

    You are surely having a hard time physically, and the medical profession seems to be mainly making it worse.

    I say "mainly" because you've now found this one doc who listens to you and believes you. She has prescribed the Zoely for good reason: chances are good that it may put your endo into abeyance. This is often the case with both birth control pills and pregnancy. For a lot of women with endo, a long period of abeyance may end the endo; for some it does not. You will not know until you try it.

    I encourage you to at least try this med for 6 months. It is not a pain pill and cannot mask the pain. Since the pain comes from the menstrual cycling of the uterus cells which are in other places than where they should be, anything which controls the cycling can help.

    My only question is why this doc didn't put you on a no-period pill. I think the answer is again your youth, but I'm not a doc & am just guessing. I can say this: going on birth control pills at 16 put my endo into abeyance. I stayed on them til I was about 23. Yes, my periods were still a little heavy and a little painful while I was on them, but they were better than without the pill.

    Your doc is willing to work with you. She is required by law to follow certain protocol. She or any doc who's willing to consider endo is probably required to try you on birth control pills first because of your age. She may also be required to check your blood to see if you've been using your prescription - depends on local laws.

    There are very good reasons to put off surgery as long as possible. One of those reasons is internal surgical scarring, adhesions. The more abdominal surgeries you have, the more likely you are to have complications from the adhesions.

    As to replacing sheets & clothing, I would keep the stained sheets & underpants specifically for periods & start using them a day before my period is due. Soaking them in cold water is the best way to get the blood out, and best to soak when the stain is fresh. Warm & hot water literally set the stain by a chemical reaction between the heat & the enzymes in the blood.

    I hope that you get some relief one way or another.

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