Probably have endometriosis and I’m scared. Need support :(

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So my health has been struggling for quite some time now, and I put things off out of fear but decided to finally get everything addressed this year. Im 29 years old tomorrow, and my periods have been heavy and painful for as long as I can remember, and they’ve only gotten weirder and weirder as time has gone on. I also fear cervical cancer as I put off Pap smears since I was 21 due to all the pain I was/am experiencing. I finally got one done the other day and it hurt me SO bad. I’m expecting an abnormal result. The doctor told me to relax because she “didn’t see anything suspicious so if I do have something it’s very treatable”, but I can’t help but worry because of everything else I have going on and all of my scary symptoms. I bled pretty bad after my pap, and it was definitely period blood..not just a little bit of normal spotting after the exam. I wasn’t bleeding before the pap, but I had just gotten off my period recently and it seems like it was blood that was trapped in there and couldn’t get out. But regardless of whether or not I have cervical cancer, I’m sure I have Endo anyway. Nothing “down there” functions properly, and it’s been a long and gradual process since I was 19-20. My bowels, my bladder, my uterus..it’s all messed up. I’m also extremely tired all the time and was recently diagnosed with POTS. I’ve seen a lot of women on forums like this who have both POTS and endometriosis, so it seems as though they go hand in hand almost. I’m just struggling on every level and was hoping someone out there has been through something similar. I haven’t been able to work in months, my appetite has been struggling really bad, and I just don’t see a light at the end of the tunnel at this point. My boyfriend has been supporting both of us financially, and I feel so worthless. I’d probably be on my death bed right now if it weren’t for him. I just feel like I’m too young to be going through all this crap and for my body to be falling apart like this sad

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  • Posted

    The first thing I am going to mention is that it's amazing you finally went to get your pap smear done. These are very important and you don't need to be scared of them! In the future, if you know you are going to be very anxious going into a pelvic exam or pap smear just ask the doctor to prescribe you 1 Valium to take before your appointment.

    It sounds silly but my dentist does this for me anytime I come in to have something more than a cleaning done. 

    I am so sorry that the pap smear was painful for you and that you bled afterwards. That must've been terrifying for you and it's extremely unfortunate.  

    Try not to go into the mindset of something coming back bad on your test. I know that's easier said than done but try to have a positive out look on this. 

    I am turned 25 in a few months and have recently gone through some pelvic/abdominal pain and I am waiting to be see by an OB at the end of this month. I have had yearly paps since I was 18 and they have never come back abnormal. I am suspected to have endo as well, in fact, since I was about 13 years old my doctors felt like I had it.

    My periods were extremely heavy. I could soak through an XL pad within an hour and I would bleed out huge blood clots and the cramps I had were so excruciating. I got put on birth control at the age of 13 and haven't had any issues up until a few months ago. 

    So, I bring this up because I have had some similar problems as you, but there are ways to help make yourself more comfortable while you wait for test results. 

    The number one thing I can recommend to help you feel more comfortable from losing your appetite and hopefully gaining your appetite back is start taking a probiotic. If you don't want to use a pill form, they have plenty of dairy free probiotic yogurts that help a lot with getting your gut back on track.

    Try using a heating pad whenever you can, I find that even when I feel the slightest cramp coming on just immediately using it helps reduce the pain I am feeling. 

    Really hot baths when you are at home not only relax your muscles but relax your mind. Try that out next time you start to feel very overwhelmed. 

    I know this is a very scare time, because I'm currently going a little crazy just waiting to get to my appointment, but I have talked to a lot of women going through similar situations and it's very comforting know someone who has been through these things, or who is currently going through it with you. 

    My boyfriend has also been such an amazing person to help me through this. He has been nothing but supportive and has held my hand in the ER every time I ended up there a few weeks ago. 

    That's the main reason I looked for these message boards. 

    Please feel free to reach out if you need to talk. I know this is a uneasy time and the more you can talk about it I think the more your slowly not be as scared. 

     

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    • Posted

      Thank you very much for your reply. I am always going to be scared of pelvic exams/paps because of then pain. I’m not even  baby about physical pain, but nothing I’ve ever experienced compares to what I go through any time someone touches me down there. I do already take a probiotic. Unfortunately, I think my loss of appetite stems mostly from the POTS. I also can’t tolerate heat due to the POTS either, so hot baths and even heating pads are a no-go for me sad I think the endometriosis has made its way to both my bowels and my bladder, because I’ve had zero luck getting my gut on track with any diet I’ve tried. I also have severe internal hemorrhoids which don’t help my case. I can never empty myself, and taking laxatives is miserable for me because my stool being too hard isn’t my problem, so I wind up with explosive diarrhea. I’m just so sick of living with all these ailments and want an entire new body. Tomorrow is my birthday and I can’t even enjoy it because I’m probably gonna get the results to my pap, and I just don’t see how they could possibly be normal considering all the pain and bleeding i endured. I’m so scared for my life at this point and feel like it’s too late for anyone to fix me, which sucks because I’m not even 30. I wish I wouldn’t have put stuff off, but whenever I DID go to doctors, they were so quick to blow everything off as stress and anxiety so it discouraged me. 
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    • Posted

      Oh my gosh, I am so sorry to hear that. I couldn't imagine going through that type of pain. 

      Did your OB say anything about that pain? If so, what did they recommend, that isn't something you should have to deal with. 

      Oh man, not being able to tolerate heat must be difficult too! I wouldn't know what to do without the hot baths and heating pad. 

      I would maybe recommend trying brofreeze for the pain! This is something I use for cramps or sore muscles in general. That might be a good alternative to using heat.

      First of all, Happy early birthday! I hope that you can try to go through your day with feeling at least a little happy before hearing your results!

      I think one thing that has really helped my inflammation and my horrible cramps in general is my diet.

      I have been vegetarian for over 2 years and I've been vegan for 1 year. The biggest foods that I noticed messed up my gut and would cause inflammation in my body was dairy. I mean it would get me bad. 

      Over the past few weeks when my pelvic pain started up the first thing that went was my gut. I couldn't use the bathroom and my stomach looked like it was 3 months prego from the bloat and I ended up in the ER on new years eve from all the pain. They immediately hooked me up to fluids and it washed my system out. Within 2 minutes I rushed to the bathroom and pooped haha.

      That day I started probiotics and I haven't had issues since. I'm back on my normal bathroom schedule. 

      So, I know a vegan diet doesn't always work for everyone, but that could be a place to start to see if and how it could help you as well. If you don't want to do something like that, I'd say take a look at what you're eating and see what makes your body feel good and what doesn't. 

      Your gut is so important to all the other areas of your body because if that's not functioning well, it can throw everything else off. 

      If it is endo, finding out what relieves that inflammation and pain will be very beneficial for you!

      I recently spoke to a therapist who specializes in people who have chronic pain and illnesses and one of the biggest things with pelvic pain/endo is women get misdiagnosed with other things because doctors really don't take the time to look at what those illnesses can cause and women end up on all kinds of medications and therapies.

      If you have time read A Mind of your Own by Kelly Brogan.

      I think that book will help you, I just finished it and it was eye opening! I think it will help calm your anxiety and mind!

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    • Posted

      Kim, here's a perfect early birthday gift to yourself: lookup & practice online deep breathing instructions. It is so easy to work ourselves into a state of complete negativity by focusing 100% on every bad thing that might happen, rather than thinking of good results or just something pleasant like memories of a fun day at the beach. From focusing on alk the bad there follows deep depression. I speak from having done this to myself after a terrible, disabling accident 30 years ago. Getting out of the house for a walk, no matter how much pain you're in, every single day for 15 minutes also helps. If you have to start by bundling up & sitting in a chair outside, do it. While you're out there just look at the sky. If fears or health thoughts start to intrude, just push them gently aside within your mind. If you can find an in-person class for Healing Qi Gong, especially the seated form, it is wonderful at helping us learn to take a "mental vacation" while also getting our breathing & heart rate under control.

      I'm not sure what it is that you fear most about pap smears, but as to "bad" pap smears: There are different classes of results & I'm not current on them. Under the old system in the States they went from Class I to Class IV, with the first being normal. Class II would get you a call: "We found a few unusual cells " Sounds terrible, right? I'm in my 60s and had at least 50 Paps before i was 30. In all my life i've never heard of anyone with a Class II or III dying, and onky a couple of Class IVs have died. Heck, i've had 2s & 3s many times. Statistically speaking your chances of getting a death sentence from a Pap smear are quite low. Yes, it happens occasionally, but not often.

      Yes, Pap smears can be uncomfortable. Some docs have someone on staff who knows how to do guided relaxation for women with Pap Anxiety. Find yourself a doctor who provides that service because it sounds like you're going to need it for the rest of your life. If you have endo, there are a lot of Paps in your future.

      POTS and endo???? I hope that's a typo because if it stands for Postural Orthostatic Tachycardia Syndrome, someone is pulling your leg about the connection. Did you mean PID? Either way, it's best to avoid googling health symptoms.

      Me, I hope that you have something more curable than endo. Even if you have it, it is a condition you live with rather than die from. Did you hear that? We live with endo, we don't die from it. Cherish each & every day that's pain-free. Sure the pain may return but while it's gone, learn to live gladly in those moments without fear.

      You're in my prayers for your health & your fears.

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    • Posted

      I’ve done deep breathing exercises and all that many times, and as soon as I’m done I go back to thinking the worst. My dad passed away of Sarcoma at 52, and my mom is currently battling breast cancer. So there is definitely a constant fear there, especially with how much my body isn’t functioning. 

      When it comes to paps, it’s both the result AND the pain that I fear. They hurt me bad, and I mean REALLY bad. I was completely calm and taking deep breaths the whole time, and it was still the absolute worst pain of my entire life. I’m sure if is abnormal I’m not beyond repair, but I know that every procedure down there is just going to hurt SO bad and I don’t know how much I can take. 

      And no, it wasn’t a typo. I do have POTS already diagnosed. When I mentioned the possibility of endometriosis to the cardiologist, he said it’s not uncommon to have both. Not necessarily that one causes the other, just that it’s not uncommon for someone to have both. I’m gonna have to find the underlying cause of my POTS, which is going to be a long road in itself. 

      Thank you for your reply and prayers. I will do my best to relax and keep fighting this difficult fight. 

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    • Posted

      One of the wonderful things about deep breathing & meditation is that they show us what we can do. If we can keep negative thoughts at bay for 10 minutes, we can probably keep them away for 11, and 12, and so on. They just become a mental habit with us, unlike physiological addictions. No one is going to be harmed because we quit following negative thought patterns. And fear is exactly the same.

      We can however harm ourselves with such thoughts/fears. Just as with love & anger, fear and constant negative thoughts release or trigger chemicals inside us. For anger & fear, those chemicals are good only in the short term; long term, they're harmful to us. So aside from existing physiological problems with periods and all the pain from pelvics/Paps, it is possible for us to make things worse or cause other problems in our bodies.

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