New-ish Member Intro

So, I've actually been ghosting this forum for almost a year now, but always put off writing anything up. Short bio: I'm 24 and in the U.S. This site has been a great comfort and help to me in my journey so far. My story is that I've pretty much always had awful periods since I was 12. Heavy flow, long periods, very irregular (every 3 months or so) and intense pain. By the time I was 17 I'd had a colonoscopy and was diagnosed with IBS for my extreme abdominal pain, as well as diagnosed with PCOS (they checked my blood hormone levels, which were crazier than anything they'd ever seen. Dr was shocked). I was put on a high dose of birth control and for the most part, that seemed to even out the symptoms. Or more like, any new symptoms I put down to the effects of the BC/IBS/ bad periods continuing.

Fast forward to last year, I'd missed out on about two weeks worth of pills (moving, quitting jobs, moving again) and the night my period started I ended up going to the ER. I was throwing up, in extreme pain, worse than anything I'd ever felt before. It was a small town ER so after a few house hooked into the blood pressure monitor, I was sent home when the pain pills kicked in.

Afterwards, every month I got my period, I was really sick. Throwing up, nausea and diarrhea + running a low grade fever and feeling miserable. It continually got worse every month to the point that in February I was in constant pain, still working 60 hrs/wk and finishing my college classes. I would break down crying on the way home from work. It's been the lowest point in my life.

I finally was able to make it to the Dr in March (I'd had to postpone the appointment twice because my job NEEDED me, ha) and based on my symptoms, history, family history, and how much pain I was in, he confirmed that it was probably Endometriosis. Without the laproscopy we won't know for sure, but at this point it's "officially unofficial." I'm now taking the pill continuously, and on a lower hormone dose.

I quit my job, a decision I'd been fighting with for a while. One of my manager's reactions was "You could have told me, I am a woman. I know what a bad period is like." At this point, I was so emotionally ragged I couldn't even react to that. This is the same person who never believed me when I would say I was in pain, and only let me off work because I was running a fever and we work with kids.

The second biggest change was my diet. I first gave up caffeine, then chocolate, following the recommended endo diet. I'm now working on cutting out wheat and dairy and cutting down on red meats.

I just wanted to say to everyone that I feel a lot better, but I know that can go in an instant. I think a large part of that is I've had a lot of time to destress and refocus. If I'd written this two or more months ago, it would've been totally different. I'm trying to exercise more and figure out what my diet triggers are, since that's one of the few things I can control. I am worried about my ability to work in the future. I'm pretty much worried about the future, period. But, still fighting.

And a huge, incredible thank you to everyone here. Even if you didn't know it, this community continues to be a huge support for me. Thanks guys.


4 Replies

  • Wow, you are doing great!! You are learning all about your body - the hard way!! I have "possible" endo - like you say - they won't commit without surgery!!! But I do not have your kind of pain and struggles, but it does make me think about a friend that really suffers every month, that she might have endo. I wish you all the best with your eating patterns and exercise - you are very committed - congrats and take care xx

  • Much as I don't like saying this... I'm just a bit baffled! DO you actually have Endo? The reason I say this, is because Endo can only be officially diagnosed via lap surgery. There is NO other way of diagnosing it.

    The TRUTH is that all your symptoms could be related more to period pain and to IBS than they are to Endo. It is good to hear that some of the changes you have made in your life have paid off. The fact that you have altered your diet, and that this has shown benefits could just as easily show that you DO have IBS, as opposed to Endo. Still, if altering your diet works for you, then carry on with it and reap the benefits. Even if Endo does actually get confirmed as a diagnosis, changes made to your diet can still help. Women with Endo are often advised to avoid foods that produce excess artificial oestrogen - so cutting out things like chocolate, red meat, etc. definitely won't hurt!

    Taking the pill, or any other hormone medication, is NOT a treatment for Endo. It merely masks the symptoms because you do not have periods (or, you are not supposed to have periods), so you will very likely not experience any form of period-related pain. However, Endo is so NOT just period pain - the symptoms of real Endometriosis are many and varied, depending upon where in the body it grows. Furthermore, women with Endo can have symptoms that are present all the time, and not just during menstruation.

    I was diagnosed with Endo in 2011 after more than 9 YEARS of symptoms, plus painful and irregular periods as a teenager that cleared up for a while in my 20s. I did have some symptoms that were cyclical and came and went with my periods. However, there was also lower back and pelvic pain constantly, plus constant fatigue. I found that in my case, I was incorrectly misdiagnosed with other illnesses, before my doctors finally caught on that it was Endo (confirmed by lap in 2011). I had 4 surgeries then, to remove extensive and deep infiltrating Endo. I have ALWAYS tried to avoid taking hormone treatments, because in my opinion they do more harm than good because true Endo is a progressive disease that cannot be treated by things like the Pill. The ONLY way to really deal with Endo is to have surgery to remove it.

    If the things that you are doing in terms of lifestyle changes work for YOU, then keep dong them. Every woman is different - even when we DO have Endo, our personal experiences of the disease can be different. So, it is always advisable to find what works for US. Because you have not had surgery, it is hard to say whether your symptoms are Endo, or not. This can be frustrating for some people, and lead them to feel concerned for the future (because they don't know what they are dealing with). If you remain concerned about a possible reoccurrence of symptoms, or if they do recur, then it might be prudent to discuss surgical options with your doctor. As I pointed out before, the ONLY way to diagnose Endo is via lap surgery, which gives the doctor the chance to visualize inside your body, and to actually SEE Endo growths. Deep Endo sometimes shows up on MRI scans, but this is not definitive. Other things like Ultrasounds are pretty useless, because again they may not show Endo which is actually present. Many Gynaecologists who try to diagnose via things like scans get it wrong.

    I'd suggest (and this IS only my opinion, remember) that you continue doing as you do, because you are already seeing some benefits from dietary changes and exercise. Though I don't understand why you quit your job, seems a bit extreme. I can understand if a person was badly bullied to the point of leaving work, but in your case could you not have had a conversation with your employers regarding management of symptoms at work, or changing to flexi-hours? There ARE women who get forced to leave jobs they love due to the complete intolerance and insensitivity, plus lack of support, of their co-workers (been there, done that!), but YOU do not mention evidence of bullying. Perhaps if you return to work in the future, you could consider part time or flexible working? Or, maybe by then you will have a confirmed diagnosis of Endo, so you will know what you are dealing with in terms of symptoms? In the meantime, don't stress too much about the future. There ARE ways of managing things.

    Keeping a symptom diary can help, in which you record details of any symptoms, plus when and where they occur, and how you feel. This can help you spot patterns to your illness, such as which symptoms are more common, which are cyclical and which not. Also, keep a record of any treatment you take, its side-effects and whether it works, or not, for you. Then, if you have to attend future medical appointments, you have all the information required ready to hand. Please DO remember that Endo is only accurately diagnosed via lap surgery - so if you have a recurrence of symptoms that concerns you, this option of confirming diagnosis remains available. If Endo is discovered, it can then be removed (either in the same surgery, or at a later date). So, be aware that you still have plenty of options and ways to manage your symptoms. If it turns out you DON'T have Endo, then at least you'll know, and whatever illness you DO have is what you then need to manage with the help of your doctors.

    The best way of coping is trying to stay on top of things, and you are already beginning that. Stay aware of all your options. Best wishes. x

  • Thanks for the advice! As for the 'diagnosis', I was having symptoms constantly. I didn't go into it earlier, but I was repeatedly having UTI symptoms on top of constant pain, and running fevers every time my period started, and several other symptoms of endo. I'm not pain free now by any means, but for the most part, it's more manageable. I think most women here know their bodies very well, which is why I'm confident that I do have endo. I do think that a lot of my diagnosis has to do with family history. My two sisters both have endometriosis (though I only knew one had it at the time of the Dr.'s appointment). My sisters are much older than me, and the one I didn't know had it only found out this past Christmas when she had her tubes tied. I'm changing ob/gyns in the next few weeks due to moving, and one of my concerns is that the next Dr. may disagree with the diagnosis. I'd really like to put off surgery as long as possible.

    As for the job, I didn't quit entirely because of my symptoms, but they played a large part. It was a 'Volunteer' position where I was given monthly living wages (far less than the minimum wage), but the purpose of the job was mainly experience. The breaking point was trying to complete a full load of graduate classes while working 40-60+ hr/wk.

    In hindsight, I should have tried communicating more, or better. From January to March I'd had several meetings about how I couldn't continue a 60 hr workload every week, and yet I'd still be assigned the same hours. I wouldn't say I felt bullied, but I was taken advantage of and manipulated. I was trying to keep the main post positive, and shorter, and I really don't want to get into the details of the job. I'm still upset about it, and how everything went down.

    I'm currently job hunting now. One of the comments my female manager had was that I should tell future employers in the first interview that I had endometriosis. I think it would be a topic to discuss if I got called back for a second interview, but it's a question that's been bothering me. When should I bring it up, and should I directly name it as endometriosis/ then be required to explain what it is? What are your thoughts on this?

  • I guess your decision regarding surgery is your decision. I can sort of understand the desire to put it off, because surgery is never pleasant; however, the ONLY accurate way to correctly diagnose Endo is via surgery - so you are stuck a bit between a rock and a hard place! If it were me, I'd want to know exactly what I was dealing with. However, this is YOUR body and so the decision to have surgery or not is YOURS. As to the new doctor disagreeing with the current diagnosis, this may be a risk, because unless surgery confirms Endo, there is no way of definitively knowing whether it is Endo or not. Still, MANY women go through the process of receiving several inaccurate diagnoses BEFORE they have surgery that confirms whether they have Endo, or not - so you would not be alone in that.

    As to the issue of telling future employers what your illness is - again, that's a difficult one. As stated above, the ONLY way to CONFIRM an accurate diagnosis of Endo is via surgery. So, really all you can say until you have had surgery is that doctors SUSPECT you have Endo. Obviously, it is different when a woman has actually HAD surgery that clearly SHOWS she has Endo. In my case, I had symptoms for over NINE years before doctors agreed to perform surgery and confirmed I had Endo. This was pretty annoying, given that it was NOT my decision to delay surgery - I suspected for some time that I had Endo - it was the ignorant and incompetent medical professionals that I saw who refused even to consider Endo as a diagnosis. THIS is why I advise to get the surgery over and done with sooner, rather than later, because that way you know quickly EXACTLY what you are dealing with. It is then up to you to decide if and when it is appropriate to discuss your diagnosis with people.

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