The One Symptom of Endometriosis I Find So Unfair and the Hardest One to Deal With!

The One Symptom of Endometriosis I Find So Unfair and the Hardest One to Deal With!

We have so many symptoms with Endometriosis, many of which we don’t necessarily even realisze are related to Endometriosis. I know I never considered that my allergies, my digestion and my nausea were all part of the package! Good in one way as I started to believe there were a long list of things wrong with my body!

Well, I don’t know about you, but I find the whole “pain during sex” to be the worst symptom of all. It seems so unfair and so wrong. Endometriosis is just so mean! We want to have a child, say for instance, but we are told that by having Endometriosis, it reduces our chances quite dramatically, which inevitably means, we have to have sex more often to be able to fall pregnant. Problem is, it hurts so much that the thought of having it more than once during ovulation period is just too much. We only have that small window of opportunity of about 5 days a month, and yet somehow we can only squeeze in two attempts as it just hurts too much.

The hardest one for me was actually having a relationship. I struggled with the whole “conversation” we inevitably have to face before having sex for the first time or at least within the first few goes of it. I hated how I now had to tell someone, whom I had only just met that well… you know how you like to go deep into a woman and that you really enjoy the deep harder thrusts, well, those really hurt and I won’t be able to do those positions. Sorry to be blunt here, ladies, but you know what I mean! I hated how I couldn’t give men that same level of variety they could experience with other women, how we were now restricted in terms of positions and how deep we could go. I didn’t want to be different and I wanted to satisfy my partner to the fullest potential. For years, I honestly believed I avoided relationships because of this reason. I didn’t want to be “less of a woman” and not be able to totally satisfy my partner. It became such a focus for me that I started to believe I wasn’t lovable as a woman and that men needed that satisfaction to be truly happy. I believe it destroyed many potential relationships for me as I simply focused on it too much and made it everything in the relationship, believing that sex was the most important aspect in a relationship.

What I have realized is that in a way there is a positive side to all of this too. See, we have to choose men that understand us and our Endometriosis pain, not just for the sex part but also for the days when we are feeling less than good. That inevitably means we have to find men that are loving and caring and will be considerate and tolerant. This becomes our main focus when we then search for a man, which is so wonderful! We land up with someone who truly loves us and will give on a level quite different to other men. Looks, money and exterior things ultimately don’t make us happy, so having a man that is loving and caring will fulfill so many aspects of our lives and our happiness.

I have also realized just how important it is to truly love oneself. I never recognized just how lovable I was until I met someone who truly loved me! Someone who recognized all my unique character traits and things that I honestly thought were hindrances and loved me for it. Thing is, when you find someone who truly loves you, then the Endometriosis is simply part of being with you and they accept it and work with it, just as we have learned to do for ourselves.

It is easy to feel guilty with Endometriosis. I know I used to. Guilty for not being able to attend a girlfriend’s birthday party, guilty for not being able to make it to a family reunion or guilty for not being able to have sex tonight! Thing is, we need to recognize just how bad this guilt is for us. It is much better to focus on those days when we are pain-free and make the most of those days. Create memories with those days and forget the days where you can’t. Think of the days in your life which give you the best happy memories and focus on creating more of those. Creating this as a focus has dramatically helped me to “get out of myself”. I find sometimes we get so stuck in the now, the hectic stuff going on, that we fail to just stop and enjoy where we are. Just think of things you enjoy doing and do more of them. This makes us happy and ultimately will help heal our Endometriosis.  I simply enjoy James and what we have. I make a point of doing things that we both enjoy and have fun doing! Sometimes we just go to the park and juggle some balls around. This builds our whole relationship and really makes sex just one aspect in creating that special bond in our relationship.

See, sex doesn’t have to be this horrible nasty monster, which we have to face and deal with. We can make the whole “being different” a bonding experience. We can share more about the intimacy of our bodies with our partner. We can discuss sex and positions openly, which is all a bonding experience, bringing us closer to the special person in our life.

One of the things I must say about sex is that we should never rush things. It can take us a little longer to get “warmed up” but if we wait a little, things will be far more likely to be pain-free or at least less painful. Also, a little tip on the subject… coconut oOil makes a wonderful lubricant! Safe and effective.

What is your worst symptom with Endometriosis? Do you also find the pain during sex to be the worst one? Feel free to share your thoughts!

Big hugs,

PS: If you want to figure out how to manage endometriosis naturally, sign up to my free REACH Kickstarter program. Simply click here to sign up. 

Share your thoughts...

  1. Melissa, thank you so much for this article. I am only 20 years old and the reason I decided to have the laparoscopy was because of pain during sex with my wonderful 23 year old boyfriend. After the lap, the first time we tried again I burst into tears in the middle of it because I felt as though I had gone through the surgery for nothing. For the two of us it is so hard, because we both want very much to be with each other in that way. I am tearing up as I write this. I feel incredible guilt over it. I am wondering, is there anything you have found that has helped? Many diet and supplement regimens claim to help the pain, but will it help this particular pain? I would do anything.

    • Hi Danielle,
      I am sorry the lap didn’t help things. They have been known to cause additional scaring. Ultimately, you need to reduce the endo cells developing and regaining the balance in your body. I have found Exclyzyme really beneficial – going to do an update soon 🙂
      I am sure your boyfriend understands and supports you and that you give him so much more in other ways. Try a liver cleanse – it does wonders for the body!

  2. Hey Wend,

    Thanks a million for all the advice, I thought it pointless putting stuff on them, but I will try your suggestions. When I was younger I wud use toothpaste lol.. these spots I have now are larger under the skin than they are over the skin! and not pus filled (sorry for being gross!). Wish I’d get them somewhere other than my face! Anyway I’m gona get some Maca on Mel’s advice and hope that it helps with the hormone imbalance as well as keeping up my new diet. 🙂

  3. I looooooooooooooooove this article, it brought me to tears bcuz I sounds like me but I currently don’t have to sex problems anymore because I walked away from my 10 yr relationship bcuz of the lack of sex I was able to provide and the verbal abuse about it and the rest of complications endo brought with it.

    Yes I used to find the sex and pain soooo annoying and unfair and boy can it play on your emotions as a woman.

    My most annoying this changes according to what my body is doing at the time. So sex might be it since I am now afraid to start over with a new relationship bcuz I fear another man may come along and not get it

    Another hang up I have which comes back to sex is this bloody like discharge I get down there and sometimes a little itching with is not a yeast infection (had the doc check that one). Then there is my acne which seems to just clear 4 a wk then return worse than before.
    Also my bladder can act up and have me running to the toilet to pee tiny amts and gets worse when the period starts or is about to.
    Gosh the constipation and gas pains drive me nuts bcuz the whole body feels a mess when this happens
    All these wrapped together means very painful sex for me (guess it is a good thing I currently don’t have a man in my life 😀 )
    I physically feel a mess
    So to say which is the most unfair or annoying right now is a battle for me.
    Endo is hurting me emotionally, financially and socially right now
    I hope I don’t sound too whiny or confusing but I honestly just don’t know today. :'(

    • Hi Sweetie. I just want to give you a massive big hug. I totally can relate to your story and everything you described as annoying symptoms. If it is any concellation, I used to have many of those symptoms too and don’t have them anymore 🙂
      Get onto some natural bladder healers – like Uroplex or the one from native remedies. The bladder thing could be Intestinal Cystitis. It actually has many similar symptoms to endo and I never even knew about this for years. Drinking lots of water and eating lots of fruit will dramatically improve it too. I recently had a bought of it and took some Uroplex for a few days and it is totally gone now.
      I am sure you will find someone new to love and who will understand you and your endo – or maybe you can reduce its affects so it doesn’t affect your sex life quite as much 🙂

      • Thank you for you words of comfort and encouragement. Thanks for reminding me that this will take time and that their is light at the end of the tunnel.
        Continue with the good work with this blog and your constant words of encouragement and continuous education about endo and our bodies. I will follow your advice and get more water and fruits in and see if Uroplex or anything similar is available on my little island. Thank you once again Mel. 😀

        • Hi Crissi,

          It is my pleasure and I am glad it has helped you feel better and positive 🙂 You can only keep trying and searching and eventually the answers do come to us 🙂

  4. Ann-Marie, I’d like to comment on the acne as this was a personal (embarrassing) struggle for me too. I’ve ALWAYS had bad acne. I broke out mostly during my period, but was breaking out all month long. Now, I rarely break out. My hormones balanced themselves w/ my mostly organic diet (we ARE what we eat!). In the winter, I don’t use soap (only soap I use is castile) on my face but rather wash w/ organic sugar (you can try baking soda but I found it too drying). Summer, I do use castile soap ‘cos we sweat more. Be careful w/ moisturizers, even natural ones ‘cos for those of us w/ acne prone skin, it makes it worse! But DO eat good fats.
    Again, look at your diet. You know how when we are young & they say Chocolate makes you break out, Pizza makes you break out, well that’s not too far from the truth. It’s the JUNK that makes you feel AND look like junk. Sometimes it’s a food sensitivity that causes breakouts. Some cut out dairy & no more acne! So think of what you put inside your body as well as outside your body.
    Lemon is good for the skin as is apple cider vinegar but for me, my skin was too sensitive.
    For active breakouts, use an aspirin or if you are more into natural like I am, use organic meadowsweet powder (literally nature’s aspirin, both contain salicylic acid, the stuff IN acne treatments!). What I do is take a bit of powder w/ water to make a paste & dab on any pimples. Let dry on. It REALLY diminishes them by the next day, even those big ones you may get.
    If you have acne around a certain area, like your jawline & neck, try washing your pillowcases more. If I don’t wash mine, I break out on my jawline. Also think of other things you do. If you talk on the phone a lot & that is against your jaw, that will make you break out. Try cleaning the phone w/ i.e. hydrogen peroxide, or what I use is lavender water (8 drops lavender ess. oil to 1 oz. water, this is good for ALL around use too, it’s anti-bacterial).
    Hope these extra tips from a fellow acne-sufferer helps!
    Wend

    • Thanks Wend. The skin is simply expelling toxins in the body so flushing out toxins is the quickest way to reduce acne and skin break-outs. 🙂

  5. It’s so refreshing to read this, I hadn’t realised that the two were linked – is it caused by endo in the vulva? For me the worst symptoms are discharge of what looks like stale blood, my naturopath says this is the endo tissue releasing itself from my tubes etc.. I hate this symptom, but I do have days of nothing which is nice, used to be every single day for years, wrecks my head at times makes it harder to feel nice about yourself down there, if you know what I mean. Also have acne along my jaw line and neck.. this flares up but scars are permanently there, trying bio oil at the mo at night time to help with this 🙂

    • Hi Ann-Marie. I used to have this too – the spotting bit – when I was on Depovera. It sounds like your hormones are quite out of balance – the skin illustrates this too. Try some Maca Root and also get onto a good liver cleansing diet and that should help. Also, a little side tip on skin care. I use a bottle with lemon and water as a toner, which heals scaring and then I just use Coconut Oil as a moisturiser. It feels wonderful and my skin has never been clearer. Check out http://www.highonhealth.org for heaps of skin cleaning tips.

  6. I’m glad you are blunt here. I tend to be that way too. Less confusion. I will tell my story. I’ve always had pain w/ sex. Please, not too deep, not that way, not that position, ow ow. I’d be tensing all the time. I’ve been married for 12 ½ years & I LOVE making love to & with my husband. He’s so wonderful to me, not just sexually, but just his love for me (heck, he calls me beautiful when I wake up in the morning w/ hair all mussed up & having morning breath! LOL). I had a hysterectomy Nov ’09, removed uterus & cervix. After several months of having to take it easy for fear ‘innards’ would fall out, the cervical scar healed & we could finally have sex again. We went slow, I tensed up waiting for that familiar pain, but oh my gosh!! I HAD NO PAIN! NONE! Near 2 years later & that was THEE best decision I made, having that hyst. It didn’t cure my endo, but my sex life is so much better. No doc ever told me I had scar tissue on my cervix. They don’t listen to you when you say ‘pain w/ intercourse’ ‘cos of course, it’s all in your head you know. Then when you have an abused past like I do, it’s ‘psychological’.
    I’m not saying to you ladies go out & get a hyst & remove your cervix. But, I’m glad I did. It’s more special now. I am able to be more of a sexual woman to my husband now. We make love more than we used to. We are intimate & not just sexually. Heck, here’s a little humor, I can FART! while we are making love & we just laugh. Now THAT’S intimacy!
    Mel, I understand the having to tell your partner & not being able to satisfy to that fullest potential. Since having my hyst, I don’t have to feel that guilt any longer. I can go out & not have to worry ‘bout having to have a bathroom nearby to change every hour on the hour. No more ‘accidents’. No more having to take extra protection, extra undies, & heck, extra pants!
    There’s only so much one can do to help the mind, but sometimes, we NEED the help physically. My help came in removing objects that were hurting me. ‘course, I never wanted kids anyways (tubes were tied at age 22) so removing my ‘womanly parts’ didn’t have an effect on me as they would someone who wants kids but can’t for one reason or another due to endo.
    Another lubricant that is safe for ‘down there’ is jojoba oil. I’ve used it also w/ a few drops of lavender essential oil for infections & itching that occur there.
    Answer to your last question, my worst symptom is the digestive issues. Not being able to eat A LOT of foods.
    Wend

  7. OMG, I have been dealing with this guilt a lot lately. While I do have a caring, patient husband, he can never fully understand. Especially when I’m not having a full on attack yet & I may look fine on the outside. I found myself saying things like, “yes, just be easy” & then feeling terrible afterwards for both of us. Him because I am not fully present & me for giving in when it wasn’t in my best interest.

    I’ve been so frustrated lately with how my endo controls my entire life. I plan everything around it. My best friend is visiting (haven’t seen her in a year) & I am panicked about the timing. I haven’t told her because she lives out of the country so it’s easy to hide & I really don’t tell anyone because no one fully understands.

    I recently realized that I have completely isolated myself over the past several years. My social circle has dwindled to near nothing because I say no to every invite. Either because of the timing or because my diet is so difficult. It’s easier to stay home than to be thought of as high maintenance or my biggest fear a hypochondriac or attention seeker.

    ***Big Sigh*** Wow that felt good. Sorry to be so negative….I try hard everyday to be positive & not weigh anyone down with this issue & it just felt really good to vent a bit.

    Thank you!

    • Hey Stacia. That’s no problem at all sweetie! Endo is nasty and it is mean and sometimes we just gotta express that too! Sure, it is important to be positive but there are moments when we just need to let out some of the nasty side-effects no one else really gets – a dwindling social life being one of them.
      I know how you feel about “high maintenance” but then perhaps you can use it as an opportunity to help others improve their diet too 🙂

  8. Thank you very much for that tip at the end, by the way.
    That article was fantastic. Before I started reading your blogs, I felt alone.

    My last partner, of nearly two years, left me because my Endometriosis. That was over a year and a half ago!
    My partner now, Paul, 7 months already, is wonderful!? He is so understand and I’ll put this blunt; he knows how deep to go and what positions are not to use now. He’s so loving, caring and making sure I’m ok.
    I do love him.

    • That is wonderful and it great that you found someone that knows how to treat you right 🙂
      You are soooo not alone sweetie! The internet is a fabulous way to connect – even when I am on the other side of the world 🙂

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