• Lack of sex getting me down!

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    sharry [sign in to see picture]
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    You need another opinion.... this bloke seems like a right idiot!

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    SexyBumBully [sign in to see picture]
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    Yeah, I was really happy with the gyno I was seeing. He was the one who did the laparoscopy and diagnosed the endo but he got transferred to another hospital in the area :( Im definately getting a second opinion and I have an appointment booked to see a bowel specialist, just to rule anything like that out.

    The other gyno i saw said that he wasnt disputing the fact that I have endo as there was proof in my file but he just disagrees that after such severe treatments i can still be in pain because of my endo. I'm pretty sure I know my body better than he does. I've had issues in the past with other problems and treatments not working so who's to say that it hasnt happened again with a different problem.

    I think he was just trying to fob me off because he didnt know what to do.

    ClareB

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    toycar69 [sign in to see picture]
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    the doctor we had kind of dismissed endo for my wife, until she had the laparoscopy. Its like they don't really know much about it, so they don't want to admit how bad it can be!?!

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    SexyBumBully [sign in to see picture]
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    I completely agree. The doctor didnt wana do the laparoscopy because im so young! He was adamant i wouldnt have endo because (at the time) i was only 17. I was so happy to be diagnosed though to be honest, it was like a weight had been lifted off my shoulders, finally knowing what was wrong with me. So now to be told that there could be something else, its devastating!

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    toycar69 [sign in to see picture]
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    I'd stick with the endo theory for now. Humour the doc if he wants to look at other possibilities, but my (completey uneducated) guess is the endo is causing your troubles.

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    Laveila [sign in to see picture]
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    toycar69 wrote:

    the doctor we had kind of dismissed endo for my wife, until she had the laparoscopy. Its like they don't really know much about it, so they don't want to admit how bad it can be!?!

    Well, I think its both actually. Firstly its very hard to diagnost endometriosis without actual laparoscopy, unfortunately. Although apparently its known since the 19th century, yet the doctors are not sure whats causing it. Also there are many types of endometriosis! The vaginal endometriosis is apparently not dependand on the woman circle and can cause permanent pain, unlike if I have endometriosis, its one of the type somewhere in the abdomen area, likely on the peritoneum, which reacts to my hormonal levels and is usually mainly felt during menstruation. But apparently it can be almost any where, even lungs.

    And it can be bad, I read of cases when the ovaria were basically eaten away and the woman ended up infertile. Apparently about 50% of woman having problem with conceiving a child has endo (which is a huge percentage). Although endo does not necessarily mean you cannot have a child, you still have about 50% you would be able to. And it can cause other problems with other organs. One potential problem is the risk of laparoscopy. As apparently any operation can lead to potential endo, so doctors are not keen to do it, unless necessary. Plus there are other recovery risk after it. Not to mention... Oh yes, the costs

    And I should add that the final method how to treat the endo if a woman does not want another child is removal of both ovaria to stop the woman period and therefore to stop the endometrium reacting to hormonal changes during it.

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    SexyBumBully [sign in to see picture]
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    My endo is mostly on my fallopian tubes and ovaries but from the laparoscopy it looks as though there are only small spots of it. So i guess im lucky in that respect although the doctors seem reluctant to tell me the possibilities of it getting worse?

    Im not too concerned at the moment about having a child but i'd like to be able to have the choice when im older.

    Endo can spread to other organs, I recently met a woman who has alot of it on her kidneys but this is usually only in severe cases.

    How severe is your pain Laveila? What does your pain feel like? Anything similar to mine?

    ClareB

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    Alicia D'amore [sign in to see picture]
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    I wrote a massive post and it got eaten!

    Basically what I was going to say was it's worth exploring other options since pain in that region can be caused by other things (my painful sex is mainly caused by a different condition since my endo is mostly under control on the pill) but you know your body best and so trust yourself and don't let the doctor just fob you off.

    Unfotunately not a lot is known about women's health problems and often women are diagnosed with a condition that merely describes the symptoms (vulvodynia literally means pain of the vulva for example) without explaining the cause or treatment.

    But treatment doesn't always work for endo and you can still suffer pain despite the treatment. In fact some women have hysterectomies because the pain is still so unbearable and the treatments haven't worked.

    You can lose your fertility with endo but if you are on the pill you can take it back to back for months on end - avoiding having periods can delay the damage. Pregnancy has also been known to cure endo. My mother took 2 years to conceive with me due to her endo yet with my brother conceived quickly.

    Adx

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    Laveila [sign in to see picture]
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    I am mainly suffering it just before or during my period and it varies. I can feel like vomiting when sipping just water one month and unable to stand as my legs are weak from the pain and pain killers are not helping me much. The next month I can have very little problem. Also my period can get very iregular, as I am suffering from sort of ovarian failure, meaning they dont work properly (lucky me) which can be the cause and not endo, as it can cause the endometrium to be really tightly tied and hard to get rid of during period and yes, the hormonal inbalance can also potentially cause endo, apparently. I did try hormones, but I ended up with high pressure, joint pain and other problems, so thats not option for me either Sometimes during period especially recently I can feel pain in place where the ovaria are and it can be sharp, but its not consistant (can come and go randomly) and is not present during every period and its not as sharp as cyst can cause I think.

    Right now when writing this I am in pain, my period is not due for another week at least. Its rather 10 days still and it has been coming and going for last few days. Usually its very short, like 10-20 min, half an hour at worse.

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    SexyBumBully [sign in to see picture]
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    Yours is alot different to mine, mines more consistent but i do get the same sharp pains you've described. More recently though i've been experiencing the kind of pains i used to get when i was younger when i was on my period so i think my body is just preparing itself for the long overdue period.

    Alicia D'amore wrote:

    But treatment doesn't always work for endo and you can still suffer pain despite the treatment. In fact some women have hysterectomies because the pain is still so unbearable and the treatments haven't worked.

    Adx

    I know of quite a few people who dont respond to treatments which is quite concerning considering that zoladex is supposed to be the miracle cure to endo. Im quite frustrated by this doctor but im not due back at the clinic until august now, ill definately be asking for a second opinion when i go back though. As a patient i do feel very poorly treated, they dont wana have anything to do with me is how it seems. I'm just fortunate to have such a supportive OH. When we first heard that it was a possibility I had endo and we read up on it, he just kissed me and told me we could adopt if i couldnt have kids, dispite the fact we'd only been together for 3 months! Im lucky to have him

    ClareB

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    Laveila [sign in to see picture]
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    ClareB92 wrote:

    Yours is alot different to mine, mines more consistent but i do get the same sharp pains you've described. More recently though i've been experiencing the kind of pains i used to get when i was younger when i was on my period so i think my body is just preparing itself for the long overdue period.

    Well, still, pain so severe I can barely stand on my legs and I just cannot drink or eat is not normal I think. I am really scared how my future employer would react to this, as I am hoping to be professional archaeologist and some in the discipline (like my last summer boss) would still like to get rid of women in the discipline (especially in my home country). And whats worse I in the beginning had almost no pain. But then the doctors left me for 4 years with infected apendix (3 tests failed and they treated me like a spoiled kid who does not want to go to school for tests and rather spend time in hospital - heh, unlikely, but the problem with this diagnoses runs in my family, both my dad and cousin had this problem and it was not apparant in the basic tests until almost the last minute). and this mess started. My friend who studies medicine thinks it could have caused havocs to my female parts, as it is all very close there (one reason apendix is also considered a cause for endo especially during puberty). But during the laparoscopy back then they did not notice anything, so it may be just a disfunction of my female parts.

    So I guess you have to persistant. And this is not only problem in the UK, but in other countries. Asking for second opinion may be useful and also maybe potentially for more tests, when possible, as sometimes its the last possible test which points to the problem.

    ClareB92 wrote:

    . I'm just fortunate to have such a supportive OH. When we first heard that it was a possibility I had endo and we read up on it, he just kissed me and told me we could adopt if i couldnt have kids, dispite the fact we'd only been together for 3 months! Im lucky to have him

    ClareB

    And yes, your OH seems extremely supportive! You are very lucky for have him. Keep him!

    Alicia D'amore wrote:

    Unfotunately not a lot is known about women's health problems and often women are diagnosed with a condition that merely describes the symptoms (vulvodynia literally means pain of the vulva for example) without explaining the cause or treatment.

    Adx

    Or they often just tell you to get on the pill which can at best hide the syptones, but the actual problem is still there, although more hidden. And can cause more problems in the future. Its so hard to get a good gynecologist...

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    Kinkywings [sign in to see picture]
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    HI Claire

    LIke you, i am a newbie here, and i also sufferer with Endo. Mine is also atm confined to the ovaries and a small patch on the back wall of the womb, one of my tubes was bent from adhesions and had to be straightenened out. I have been told and have read a few books on Endo which all tell you that you can have mild endo ( small patches) and have extreme pain and discomfort...

    Regarding the bowel thing.. my doctor always said it was my bowels but i had noticed a pattern in which at a certain point of my cycle and during menses i would have pain when trying to produce a bowel movement.. i also sometimes get shooting pains up both the front and back passages. My bowels shift from the runs to constipation to normal at various stages in my cycle. However, after going to see a private Gyn he explained that all my sysmtoms were due to endo... he also did anotehr lap to check the status of the patches and cut adhesions, he was fantastic.

    Regarding sex with Endo....i also feel a burning sensation and like you know if you have a scab abd youpull it off then touch the exposed skin? well i get a feeling like that with the burning sensation deep inside the vagina, towards the back of the cervix.. i also get sharp pains during thrusting at times. I have also found that deep penetration when we can manage it, leaves me constipated the next day.

    I have had to explore ways of limiting the pain and making things more comfy... tbh at times i am in too much discomfort to even want sex.. and this takes a vey understadning partner to put up with it. Make sure your partner is fully aware of what you suffer and when. and exlplore ways ( on YOUR terms) that make you feel more comfy.

    I have found that having lots of foreplay and finger play, oral sex and plenty lubrication... help before attempting pentration. Ive also learnt to avoid positions which allow deep penetration when i am feeling sore as it wonly serves to make things worse. Experiment with positions to find what feels more comfy for you... you may be like me... and different positions work for you soem of the time, while others wont and vice versa.

    When you have a condition like this it is important that your body is relaxed in order to minimise chances of additional pain.... so try baths, showers, massages, tantric sex, sex games, bondage etc... but make sure you are very relaxed and very lubricated before attempting penetration. On penetration, go slowly, thrust slowly, moving in bit by bit and stop at any point you start to feel uncomfy.

    These are just some things that have worked for me... hopefully they might help you out a little bit too.... sex doesnt havet o end because of Endo, but it does require rethinking. ((( hugs)))

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    SexyBumBully [sign in to see picture]
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    Wow, your gyno sounds amazing! Wish mine was like that! Could you tell me the names of some of the books you've read please? I dont know where to start but would like to have abit more knowledge.

    I dont have much trouble with my bowels to be honest, only very occasionally do i have problems.

    My OH is very understanding, so hes happy to go along with what i want or dont want to do. We practice oral sex quite alot and do use lube as these do help but its the permenant pain im in causing more of the problems because its only worsened on arousal. As for trying different positions, my OH is scared to as hes worried about putting me in unnecessary pain.

    Thanks for the tips, i really feel for you! *hug*

    ClareB

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    Kinkywings [sign in to see picture]
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    HI HONEY, Sure, i'll look out the books and post up the names and authors for you.

    Im pregnant at the moment so all the endo probs are at bay just now ( thank god)! My oh always worries he is putting me in pain, but i learned to be very open with him and tell him what worked and what didnt.. as i say sometime sim ok , other times im in pain.. we just have to adjust to what suits at the time.

    Please feel free to ask any questions :-) xxx

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    Kinkywings [sign in to see picture]
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    i meant to say.. regardign the gyno.. i went for years with undiagnosed Endo.. docs thinking it was my bowls and also had loads of invasive testing whcih all came back neg.. the thought i was making it up .. eventually sent me to a nhs gyno who did a lap and told me i had severe PID , put me on loads of meds which helped for a bit but as it grew back i was as bad as ever.. i demanded a private appointment with a gyn and paid for the op whic in total cost me £4000 but it was worth it to get a proper diganosis and treatment... and he even showed me photos of my insides so i could see the endo patches and he explained why i was getting pain etc.. honestly he was fab, i couldnt recommend a better gyn.

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    Kinkywings [sign in to see picture]
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    hi again...

    These are the books that i currently have.... they are worth a look, i certainly felt relieved to knwo i wasnt the only one suffereing certain symptoms xxx

    http://www.amazon.co.uk/Living-Well-Endometriosis-Doctor-Collins/dp/0060844264/ref=sr_1_1?s=books&ie=UTF8&qid=1303475208&sr=1-1 by Kerry-Ann Morris(Paperback - 4 May 2006)


    http://www.amazon.co.uk/Endometriosis-Sourcebook-Definitive-Strategies-Sourcebooks/dp/0809232634/ref=sr_1_8?s=books&ie=UTF8&qid=1303475208&sr=1-8 by Mary Lou Ballweg and The Endometriosis Association(Paperback - 1 Oct 1995) http://www.amazon.co.uk/Coping-Endometriosis-Compassionate-Alleviating-Misunderstood/dp/1583330747/ref=sr_1_9?s=books&ie=UTF8&qid=1303475208&sr=1-9 by Robert H. Phillips and Glenda J. Motta (Paperback - 19 Apr 2001)
    http://www.amazon.co.uk/Endometriosis-Other-Pelvic-Susan-Evans/dp/0749927054/ref=sr_1_4?s=books&ie=UTF8&qid=1303475335&sr=1-4 by Susan Evans (Paperback - 24 Aug 2006
    http://www.amazon.co.uk/Reclaim-Your-Life-Healing-Endometriosis/dp/095567851X/ref=sr_1_3?s=books&ie=UTF8&qid=1303475335&sr=1-3 by Carolyn Levett (Paperback - 7 May 2008
    http://www.amazon.co.uk/Recipes-Endometriosis-Diet-Carolyn-Levett/dp/0955678501/ref=sr_1_2?s=books&ie=UTF8&qid=1303475335&sr=1-2 by Carolyn Levett (Paperback - 11 Dec 2007)
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    SexyBumBully [sign in to see picture]
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    Thanks so much. Yeah, ive seen the photos from my lap too. I'll look up those books first chance i get, hopefully they can answer any remaining questions i have before my next appointment in august and maybe even answer questions i havent even thought about.

    Yeah, it really is a huge relief. Have you met many people with the condition. I mentioned a few posts ago that i recently joined a support group? Before then I didnt know anybody with it. I felt so isolated so its great to meet people who know exactly what your going through and who dont think your exaggerating about the pain! Or lying about it altogether!

    ClareB x

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    Kinkywings [sign in to see picture]
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    i know what you mean.... i havent met anyone with the condition no, i just try to read b ooks and help myself where i can .... xxx

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    occhiverdi [sign in to see picture]
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    Kinkywings wrote:

    i know what you mean.... i havent met anyone with the condition no, i just try to read b ooks and help myself where i can .... xxx

    KW is well educated on this and other gyno things.... :D

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