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The Unspoken Side Effect of Endometriosis

Its a simple three letter world. The media loves it. It sells products. And TLC made a hit song about it in the 90s.

If you haven’t guessed it, I’m talking about sex.

Yes, this shy, introverted youth pastor’s wife is writing an article about sex. I never thought I would see the day but honestly it is a part of endometriosis that needs to be talked about.It is a very real and very painful part of having this disease however I think that many women, myself included, find it hard to talk about. I remember feeling so awkward talking to my doctor about it the first time (then infertility happened and after fertility treatments all modesty and privacy regarding sex went out the wind0w). I think many of us consider our sex lives private and dealing with unbearable pain is bad enough but the disease impacts our most private and sacred aspects of our lives, it can be very hard to deal with.

My husband and I waited until we were married to have sex. While it made for a somewhat awkward drive to the hotel on our wedding night, I think that we both had this vision from Hollywood where everything would be perfect and magical. Little did we know how far from the truth that would be and how endo would be an unwelcomed guest on our honeymoon (and lives thereafter). I think the phrase “that hurt like hell” was mentioned at some point.

Do you want all the details from my wedding night? Of course not but the point is pain associated with sex because of endometriosis is a real problem that impacts your life in many ways, as well as your partner. Obviously there is the physical pain but also it is very hard emotionally to feel as though you cannot perform or provide intimacy in your marriage or relationship like you would like and emotions such as guilt, shame, and even anger emerge. It can be mentally challenging to feel as though you do not fit the role that you should be. I mean I always think that we are a couple of young 20-somethings that should be in our prime right? Not having to medicate before hand and sit on an ice pack afterwards., right? We cannot leave our the spiritual aspects as I think it impacts the spiritual realm as well.

So what is a girl to do? I am by no means an expert but in my 5+ years of struggling with this, here are some suggestions:

1- Talk to your doctor. You have to. He or she needs to know all of your symptoms. Not only could it give insight to the placement/severity of your endometriosis, it could point to other issues such as Interstitial Cystitis (which is extremely common in endo patients – half of endo patients also have IC – which also has the symptom of painful sex) or an infection.I have learned that post-menopausal women are prone to vaginal infections (which can cause pain and irritation) so if you are on a treatment, such as Lupron, that puts you into a menopausal state, that could be a factor with the pain. Your doctor will also be able to provide suggestions how to lessen the pain and discomfort, such as physical therapy.

2-Talk to your partner. Communication is absolutely essential. Obviously if you are speaking to a man, he will have absolutely no clue about what you are experiencing unless you tell him. He still won’t be able to fully understand but having the conversation is crucial. Men think about sex 99% of the time. The other 1% is reserved for food and sports. They have a true biological need for sex and that need not being met can make for one unhappy bear.Will explaining to him how much sex hurts make his need go away? No, but it helps him to be more understanding . I know it took my husband a while to understand that rejecting sex was not the same thing as rejecting him. Its not that I didn’t want him but I physically could not handle the pain. He did not get that until I explained it to him and I don’t think he is the only man that thinks this way.  He began to understand that just as it was frustrating for him not to get any, it was equally as frustrating for me to not be able to dish it out. As important as it is for you to convey your feelings about how painful sex is impacting your relationship, it is equally important to take the time to listen to your partner’s feelings. While I often get upset during these types of discussion, I know that it is helpful and healthy to allow my husband to put his feelings out on the table as well. He needs to vent and be heard as much as I do.  Communication is so vitally important and it is important that the communication goes both ways.

3- Let go of the guilt and shame. As I stated just a moment ago, when my husband and I talk about our sex life (or lack thereof), I often end up hurt or upset because I feel guilty for not being able to provide like I think I should be able to. We often hold onto these lofty ideals of how we think we should be as women, wives, and mothers (and all the other roles we fill) and most of the time it sets us up for failure as when we can’t achieve these ideals we feel guilty and ashamed. You are not to blame. You are not a failure as a woman, wife, or partner because you deal with painful sex. It is an unfortunate aspect of living with endometriosis and while it stinks big time, it has no impact on who you are as a person. It is important to make that distinction.

4. Be creative. I’m not going to go into a lot of detail on this one because I am a shy, introverted youth pastor’s wife but I think you get the idea. It may be a game of trial and error but find out what works for you!

While it may not be the most comfortable thing to grab a girlfriend and say, “can I talk to you about how much sex hurts,” it is important to have support from someone. While it may be your doctor, a best friend, or an online fellow spoonie, it is important to be sure that you have support and have a place where you can safely share your feelings about all aspects of chronic illness. I welcome you to email me, leave me a comment, or hunt me down on twitter anytime!

<hugs and painfree wishes>

Jamee

About Jamee

Jamee is an Endometriosis warrior and a Fight Like A Girl Club Power Team writer for Endometriosis. Visit Jamee at these places: Twitter: @newkindofnormal Blog: A New Kind of Normal Facebook: A New Kind Of Normal

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46 comments

  1. Great article, Jamee! I continue to follow your blog and journey. I’m in awe of your strength and attitude.

  2. Thanks for being brave enough to post this, Jamee! It’s so true. May God bless you and continue to guide you through your struggle.

    • Thanks Karly! It was pretty difficult but I knew it had to be done! I know I’m not the only one out there struggling with this! Thank you for your kind comment!

  3. A subject difficult to talk about but very well written. I still miss that intimacy and still feel guilty, after 10+ years. I’m so lucky to have such an understanding, loving, husband.
    Thank you for taking the time to write this Jamee.
    xXx

    • Tricia thank you for taking the time to comment and share your story. It is so helpful to know that we are not alone. I struggle with the guilt too and wish that intimacy could be just that – intimate. Sounds like you are lucky to have an understanding husband! I am lucky in that aspect as well! Hope you find relief!

  4. Thank you so much for writing this! This is something I have been dealing with for a very long time, and only in the past year have I been able to put a name on it–endometriosis. My sex life has been impacted immensely–meaning I’m engaged to the love of my life and have not been able to have sex with my fiance for months. The guilt from being ill is bad enough… not being able to “please” my significant other is very painful. We’ve found ways to work around it, but it’s still a pain (ha. ha.)! You are so brave to write this article–pastor’s wife or not! Thanks so much for putting this out there, as it’s an issue that’s been bugging me and something that us endosisters need to talk more about! <3

    Ellen (@LizzieCady)

    • Thanks Ellen! I definitely think its something that needs to be talked about more! Endo robs you of so many aspects of life and this part is no less important than the others!

  5. Great article! My hysterectomy was nearly ten years ago and I still deal with all of this crap, so your article will help more women than you know. Popped over here from your regular blog, nice job.

  6. I know it’s hard to bring up the subject of sex, it’s hard to talk about sex. And, for me, it’s harder to talk to my hubby then it is to talk to “strangers” about it.

    But, it is so important that we do talk about it. If not, there can be a LOT of hurt feelings and emotions going all over the place.

    A lot of the time, I am in too much pain. But, without talking to the hubby-he wouldn’t have know how much I missed the contact. Not from sex, but from the tenderness of his touch. That I missed him holding me, and scratching my back. Just like I wouldn’t have known that even though he understands that I don’t feel good, it still can make him feel unwanted.

    But, I feel like as a girl, openly talking about sex is just not something I should be doing. LOL! If I hadn’t gotten sick, and it be something I HAD to do, so wouldn’t have!

    • Thank you for sharing your story Monique! Initially I had no idea who this impacted my husband and he finally broke down and let it all out. I don’t think he fully understood how much it bothered me either as in not just physically but emotionally as well that is why communication is so important!

  7. Thanks so much for being brave and putting your love life out there in public. I am all for openness and dialogue on healthy sexuality and all that entails. I am so sorry that you have to deal with all this pain. I can’t even imagine! I am so glad that you are willing to share and communicate and help others navigate the same waters. Bless you!!

  8. I wanted to thank you for sharing this. Honestly, it gives me hope that when and if I get married I’ll find that same type of understanding and communication. I’m 22 and I haven’t had sex yet so I’m not sure how it’s going to go but, a few months back, I started to have so much pain that I can hardly wear tampons anymore. (that’s been a hard adjustment since I’ve been using them since my very first cycle!) I really respect your honestly and vulnerability. Thank you.

  9. I too waited until marriage & ended up with a horrible honeymoon thanks to undiagnosed Endo. I cried every time we tried to be intimate for the 1st three months of marriage… talk about an angry, frustrated husband! Even after my diagnoses, 2 laparoscopies & a round of Lupron things didn’t improve. Then I started internal physical therapy to stretch the scar tissue, learn relaxation techniques, etc and now I don’t know what I would’ve done without it! The PT was extremely painful but no worse than the physical & emotional pain of our failed sexual encounters & the end result was a happy, healthy sex life. There are times I still experience discomfort but not often & not for long. For all you girls experiencing pain during sex please ask your doctor if they can refer you to a physical therapist who specializes in pelvic floor dysfunction… it’s definitely worth a try!!!

  10. nicole Alexander

    Thank you soooo Much for posting this. I as well have this condition. And also kept myself until marriage and Am also A Youth Pastor along side my husband. I dont think it was by chance that I came across ths article / blog. It was like you read my mind and wrote it down. Thank you for doing so. i am to the point where I feel I’m not meeting my husbands needs as a wife because of the pain and we are also wanting be conceive, well when sex is far and inbetween its a bit difficult to jump that hurdle. I was diagnosed just 6 months after are wedding (9-5-09) and it explained sooo much and all the pain and agony I expirenced for years!!
    Again Thank You. I really took this all to heart and it truly meant alot to me as I read!! God Bless!!

  11. I was raised in a conservative house hold and I was planning on waiting, I ended up not waiting. While there is a part of me that sort of wishes I had….More of me is glad I did not because this is how I found another awful symptom of endo… that horrible pain…. I could only imagine being stuck with a man I’m married to that may be bitter because he ‘didn’t know.’
    this pain is difficult partly because my bf is very well endowed…. Sometimes it leaves me in tears… it’s getting to the point where if we are lucky we’re involved once a month… I also have a history of very early childhood sexual abuse. I just started to remember less than 2 years ago so it’s very traumatic doing other things….. i feel depressed and worry that I’m not good enough or doing enough…
    What really made my bf understand is when I told him it feels like someone lit a knife on fire and started stabbing me and twisting the knife… He got that, which helps…. but I miss the closness…. i love him so much it can be so difficult at times.

  12. Jamee

    Thank you for posting this, i was diagnosed with Endo last December, this all came about after I had intercourse on a regualr occurance with my partner of the time and ended up in tears each time, after seening my nurse she sent me to the gyne strait away, after being sent away once, they finally saw me again and realised the problems, a month later i was under the knife having key hole.. I totally agree with you, talking to someone you are with is important. When ever i said stop, i felt like i was ripping the male pride away from them, ive been in two relationships when this had happpened and i felt worse for them than i did me, but then i never knew what it was, which looking back is prob a big reason to why we are not together..

    I hope all those who suffer will get to read you article and it helps them as everything you said i can totally see in my own situation..

    Take Care.

    C

  13. Hi.
    Thanks alot for posting this.
    My name is Tiaane and I am 18 years old I found out I have endo in January of this year.
    My menstruation pains were very bad, i got very sick and got nausea`s half of the day so i went to the dr and 3 weeks later i went under the knife.
    This month I have to go for a check up again and I am terrified because my pains have been so ,much worse in these 6 months that has passed.
    Because I am so young still and I have endo I am so scared that I wont have any children one day that is my biggest fear.
    It is so nice to have people to talk to with the same problem, because we get so many people who doesnt understand.
    I hope to read more soon!
    Tiaane`

    • T

      i had my op 4 months ago, i was told to go back to the hospital 6 months later, my pain got worse after so bought my appointment forward.

      Because of my age- im 20- my consultant was worried as we are the ones who have plans for children obviously. He has given me contraceptive pills to try and help and sending me to a dietition also as food is a big part of it as they say wheat, dairy and red meat can cause the pain and build up of the blood spotting.

      I have to have regualr cheack ups and any problems i got to my regualr GP for more advice

      Hope this helps a little. Like you said its a worrying situation as there is no cure..

      C

  14. Thanks for sharing! I can relate to everything you said! I also endure all the painful side effects from Endo, for the last 13 years or so…its very hard to live through and even talk about 🙁

    • sherry crutchfield

      I am glad you touched on all of these issues. I have had endo for the past 18 yrs and have experienced everything you just talked about!

    • I am almost 41 years old and have had endo since I was in my early 20’s. I am about to get married next month and this is an extremely, extremely difficult conversation to have with my fiance! I APPLAUD your husband Jaime for understanding. He is not like many. I’m not sure if my fiance doesn’t understand or doesn’t find it credible, or maybe is just extremely hurt by the fact that we don’t have sex more than once or twice a month. It is SO painful, I don’t even want to think about it most times. I realize that there are other “outlets”, but because the whole subject has become emotionally painful for both of us- I just try to avoid the whole thing. It makes me sad because I love my fiance so much (obviously- I am marrying him!) and I sometimes feel like he’ll leave me if things aren’t different. Realistically and rationally I know that isn’t true- but I know how hurt he is and I often wonder why he stays with me if I can’t act like a “normal” wife.

      Thanks so much for writing this- it made me feel validated! And frankly, sometimes we need that, right??? Hang in there girls!!!

  15. Thank you for posting this. I can relate to the pain during sex due to endo and IC. I also have PFD, a painful trifecta. I think you gave very good advice that I agree with completely. Thanks!

  16. I love that you wrote about this because it is something women go through and are very unlikely to talk about. I was diagnosed almost 13 years ago and painful intercourse was a very difficult thing to deal with, not just for me, but for my husband as well. I wanted to be intimate and keep him happy, so I kept trying, but ended up in so much pain afterward. Eventually, he came out and said that it was as unpleasant for him as it was for me. He felt like he was raping me or something. It was awful and something I held in for a long time. Thanks for opening up a real discussion about it!!

  17. I need some answers please?! I was diagnosed a year ago after having surgery. My husband doesn’t seem to understand how much pain I endure on a daily basis. His mother had it so bad that they gave her a hysterectomy but she says she never had it like me so i feel as they don’t believe me because I only have stage 1. I wish they’d understand. My doctor explained that the stage has nothing to do with the pain. Mt question is treatment….. I have tried birth control which only flared up fibrocystic disease in the breast. After about 4 different doctors I finally found one that is somewhat helpful in Clermont fl. He put me on aygestin. I have been on it for almost 2 months and have had nothing but trouble. I am now on heart meds because of the wellbutrin that counter acted the side effects of the progesterone. I constantly cramp the same or worse since on aygestin, have had constant spotting, horrid mood swings, I never feel happy and am always snappy. I have lost a tom of hair…. So much hair that I had to cut it all off. When I called my doctor, he seems to not believe me. Said its too soon for the meds to cause these side effects. I’m going back Monday and telling him that I want off of them! He told me at the last appt. that if it didn’t work he was going to try lupron. I’m terrified to try it! Can anyone give me suggestions? I also have adenomiosis and IBS. I just want to be normal again!

    • This is for your husband…. my husband never fully understood either until he did his own internet research on this disease….. there are alot of great support sites out there for men as well…. One that my husband really likes is EndoMen…. it is a support site for men dealing with women with endo. It really opened up my husbands eyes and our relationship couldn’t be better!!

    • I had adenomyosis and not endometriosis. I opted for a hysterectomy at a very early age. We have one child. Adenomyosis was a tricky diagnosis, and that with IBS is incredibly painful. I was unresponsive to all medications, and had a rough time. My husband didn’t, and still doesn’t understand, but we do our best, and laugh a lot at the problems in life. I know that having a hysterectomy is it’s own set of problems, but I do not regret the surgery, and have been better for it. I have MS, and other issues that have since complicated my life, but the surgery isn’t as scary as it seems. It is permanent, and sad, and life altering, but it is also a solution to a painful, and uncontrollable problem. I am open to e-mailing if someone wants to discuss this more.

      • I have the IBS also. (its a little embarrassing) there are times I feel like I’m giving birth to a child from the pressure and the pain gets so bad I feel as I can’t sit down. The endo has just caused constant cramping and cyst ruptures that have me laying in the female position. I hate it! I ant thank everyone enough for your responses. It’s nice to finally have someone who understands what really goes on without feeling like I’m not believed. Please ook me up on fb and keep in touch. I really need this support because of it being so depressing. I don’t normally publicly speak of it on fb because my husband says it’s not something to discuss with others and that it’s a personal matter. It makes me wonder if he’s embarrassed about me having this disease. My fb email is jen.burrus@yahoo.com please send me a request 🙂 thank you again for all your support.

        • Hi. This is probably something you have tried, but I have bowel problems too alongside my endometriosis it is complete life crushing agony. . . But do find that buscupan can take the edge off the spasms along with movicol which is a drink (i admit not a very nice one but I think they do I chocolate flavour!;-)) I rely on these and a cocktail of painkillers. I hope your partner makes some serious steps toward understanding soon. Xx

  18. Ive had endo since i was 13 and this is a very difficult topic to talk about most times with your partner….. I was engaged and it ended quickly due to the fact of never having intamcy and he just really could not understand what i was going through….. about two years ago i met my wonderful husband who did so much research to understand what i was dealing with… he even joined some helpful sites for support for him for example Endo men (great site!!)…. because he did our marriage couldnt be better…. we have found creative ways to be intimate without having to always have sex and be in pain.,,, Conversation is definately the key to having a open relationship when dealing with this disease…. until you get to that point there is always problems in the relationship…. i know cause my husband started to think there was something wrong with him!! Which was not the case until we fully opened up and talked about it…. now our life couldn’t be better!!

  19. I congratulate you for your braveness and sharing your feelings with all. I wish all women who did not speak until now to look at you and be inspired. The help is out there, No WOMAN should suffer.

  20. Hi !

    My name is Zhane from South Africa.For years I have been suffering from servere pains,cramps and heavy periods that lasted up to 12 days.At times I spent weeks in hospitals under observetion.Only to be told I had an infection and could not understand what caused it.

    When I was in my twenties I had a miscarrage that left me with a scarred tube,I was informed that the scarred tissues were causing the pain.It did not make any sense to me since I had 1 semi blocked tube that was getting worse every year.

    Early this year I was informed that I must have an op but I chickened out.I was informed that am over 35 and the chances of having a baby are very slim espacialy since the IVF did not work.I searched on the internet and had a self diagnosis that am suffering from endo.

    The sites had given me more information and the post a very huge support.I know now that this is a very common deases that is often miss diagnosed in our shores.I’m not the only person in the world who suffers from the deases.

    I would to thank the lord for granting me the sense of searching about the illness.My wish is to have the voise to talk about it and helping those who are suffering like me,especially the young women because I know how it feels.

    Thank you for opening up about this sensetive painful subject.

    Love Zhane

  21. Well I accidentally pressed send in the middle of my sentence….
    Anyway, I was saying that I choose not to have intercourse at all with my husband because of the pain and my question for you is how do you do it? How can you emotionally handle the pain and how does your husband handle his own emotions knowing that sex hurts you so much. We would try and I could tough it out sometimes but it wasn’t worth how much pain we both had to go through…

  22. I was diagnoised in my early 20’s with endo. Although early on sex was not painful, as the disease progressed it eventually became painful. I’ve had 3 laparoscopies, and several cystoscopies, before being diagnoised with Interstitial Cystitis. Thankfully I had no problem getting pregnant with my 2 daughters, (plus one step son) when we decided to have a forth thats when the endo got in the way (it never happened). After my last surgery my doctor had me do both an IUD (marina) and oral birth control (norathindrone), which stopped my period completely and the pain from the IC was gone. I had 3 good years, but now at 45 I have been getting break through bleeding and extreme pain again. I have also doubled the mg on the norathindrone which helped a little, but it is affecting my breast now. I am also very active, but still a bit overweight, I did a triathlon yesterday. The extreme training and extra weight makes the endo worse at times, but being sediment the weight only goes on that much faster. I have an appointment with my doctor on Friday to schedule my full hystorecomy and it cant come a moment too soon. I have found that dairy makes it worse so I have changed over to soy milk (silk very vanilla). Unfortunately my daughters have inherited this endo also. My older daughter started her periods at age 9, by age 12 she was on birth control, at almost 20 she is now on a pill that she only gets her period 4 times a year. Another issue we had dealt with is the church, where birth control pills are frowned upon and looked upon as birth control and not as a medicine to deal with this disease especially when dealing with a child that is still a virgin. Thank you for posting this article, it was most helpful.

  23. Hi all, I too have endo, do not have any friends though who have it. Would love to have a chance to be friends with some of you who have it too, who can relate to me as someone who has the condition as well. Any of you who would like to share their FB name with me so I can add you? Thanks in advance and God bless you all:)

    Ysa

    • Just want to let everyone know there is an awesome support group for endo/adenomyosis on Facebook. We talk almost daily and have all become friends. Check it out. I don’t kow if you can get there from this link but it’s just titled “Adenomyosis”. It’s a closed group, so you have to request to join but we’ll add you:) http://www.facebook.com/#!/groups/18094901520/

  24. Hi ladies i am do glad to have found this website .
    I didn’t get my peroid for 4 months and i went to the Gyne and she checked and said that i have 2 cyst ,and he couldn’t find my right ovary and may have endo so he gave me some pills to start my period which i didn’t take the pills because we were going on holiday so a few weeks late it came on its own .OH boy did i bleed …lol
    it was so heavy and it have lasted for two weeks ,and it had such a bad odour .I was so embarrassed by this .after two months i went back to him because i was bleeding for 12 days (my and husband say he can’y understand how i am still alive..LOL) .so he said i should have a laprocop don’t which i am so scared of.I do suffer with a lot of back and leg pain could it be because of the Endo ?Please hlep it is driving me crazy .I a trusting in the good lord to help go through is .god is so good 🙂 email me at drbreception@evergreen-shipping.co.za .I would love to chat .

  25. Hello! My story sounds just like every other woman. I found out I had endometriosis after my first pregnancy was ectopic. Then I was blessed with my daughter:). That was five years ago. Since then I have had 5 miscarriages, 2 d and c’s, and 2 lapriscopic surgeries a year for the last 4 years. Tomorrow will be my 7th. Most people don’t understand what this disease is like. My husband and I own an organic dairy and ranch in Idaho. I also have a part time job. I keep pretty busy:). So most people assume I’m fine but I’m not. It’s so hard to help my husband on our dairy when I hurt so bad, not to mention how fatigued I get. I get so frustrated that i feel I’m onry all the time. I’m doing this all to have one more baby! Drs have told me I’m lucky to have one and I know that. She is my miracle baby:). This quest has turned into an obsession for me, drives my husband nuts. I still feel he doesn’t understand. I know he loves me but I don’t feel I get the support I need. His family lives close and are great to help but I don’t like having certain, uncomfortable conversations with them. I lost my mom a year and a half ago and that devastated me. I went to a dark place of depression and put on so much weight. My husband used to think I didn’t want to be intimate because of my weight but it’s not, it hurts! I sometimes wonder if I keep the weight on as an excuse that he can see so he won’t approach me so much for intimacy. At least he can see that. What people don’t understand is this disease is so hard on a marriage. Not just sex but cleaning the house, taking care of my daughter, going bowling or hunting like I used to do. I miss the “old me”:). Thank you for letting me vent. I’ve never written a letter about endometriosis, let alone to a stranger but I have noticed that the women that have this disease are so supportive of others. Thank you all for that. I was wondering if you could email me back and give me more information on support systems and weight control and emotion control. The pain is never in control so I don’t even ask anymore. Thank you so much!
    Rebecca Keetch

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