F36
Endometriosis
October 02 2015
Comments
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Seachange73
10 years ago
I didn't know anything about this and had to google it and read about it. I haven't come across this among family nor friends. sounds painful. Can't help much as never had this (touch wood) but am wishing you the best in the future and hope the pain is manageable for you. take care.
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RHP User
10 years ago
Quoting 'lilyorchid' I didn't know anything about this and had to google it and read about it. I haven't come across this among family nor friends. sounds painful. Can't help much as never had this (touch wood) but am wishing you the best in the future and hope the pain is manageable for you. take care. Thank you for your kind words. Apparently it only effects 10% of the female population so it's not unheard of but its also not terribly common either. There is lots of information on it and such so that helps. Being as I only have a mild case (side effect wise) at present the doctor said the best thing for me is to stay on the pill as that slows it down/stops it in some cases. Hopefully I can get away with it not getting worse for a couple of years. The main issue for me is that sometimes it makes sex uncomfortable/I bleed after sex or orgasm and to me that seems like 'the end of my sex life' I feel like it means I can't go swinging anymore, because honestly how many guys are going to be ok with you bleeding on them :(
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RHP User
10 years ago
My eldest sister also suffers from the condition and sadly lost her ability to conceive, a close friend also suffers badly with cramps from them, when doing some research for myself with regards to contraception, it came up that the depo injection was something used as treatment, it does have other side effects though which can affect people, like anything... Best option is to do some homework and chat to your gp about possible pain management options, also check out your natural alternatives such as Ayerveda, all treatments are trial and error with what's right for you, I hope you find a manageable solution soon x
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RHP User
10 years ago
but The Guardian news online site just ran a series of articles and reader comment pieces on endometriosis, lots of women wrote in about their experiences. Googling 'the guardian endometriosis' should bring them up.
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RHP User
10 years ago
Hi and yes I'm a guy and funny that this subject is where I make my first reply.....so here goes. My wife was a long time sufferer from this condition so much that she did undergo surgery and had a partial hysterectomy, she had suffered the pain for meny meny years and it played havoc with us trying to fall pregnant. So after meny years of pain and heat ake, and also after the birth of our son (artificial insemination to get pregnant again ment tries), she went through with the surgery, she has NEVER looked back with regards to health and has only once or twice been a little upset over not being able to have had another child but we have our son😆😇 What to expect......not a woman so can't tell u of the pain, but have experienced all the pain that my wife went through for years...and years and then the happiness she now has after the surgery, just prepare urself for such pain later in life and what may or may not be ur outcomes either with or without surgery. I hope this has helped just a little, oh and no medications were helpful for total pain relief, and it really fucks with ur sex life (penis in vagina, so I suspect dildo/vibrator would be the same). Best of luck😉😆 - Posted from rhpmobile
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RHP User
10 years ago
Quoting 'lilyorchid' I didn't know anything about this and had to google it and read about it. I haven't come across this among family nor friends. sounds painful. Can't help much as never had this (touch wood) but am wishing you the best in the future and hope the pain is manageable for you. take care. Thank you for bringing this to our attention as we had to google it too.. We wish you the best of luck xx
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RHP User
10 years ago
i have had the condition found when I was about 35, I had been on the pill since 14 due to heavy periods, was fine and then started to get period pain went on for about 12 months, my GP sent me off to a gyno, he couldn't find anything so recommended a laparoscopy and they found endometriosis. He did laser while I was under to burn off the growths and I took a drug danazol for 6 months that basically turned my hormones male - to stop my female cycle. It had potential serious side effects but thought that was a chance I'd take. I never had a problem after that. I may have been lucky, I had an awesome doctor, Prof Gab Kovacs, an IVF specialist knows all about lady parts and their issues. Good luck, finding a good doctor is a must - Posted from rhpmobile
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RHP User
10 years ago
Is I suspect that the treatments are way, way, way better now than when I was diagnosed with the condition in my very early 20s. I was also incredibly lucky, I found a fantastic specialist early on in the piece & got fantastic treatment. I went off the pill in my late 20s and never, ever fell pregnant. However, to pep you up and give you hope, I managed against all the odds to fall pregnant a couple of years ago, purely by accident. After the tears and getting over the shock I was thrilled. Unfortunately, I had a miscarriage. Such is life. Some things are just not meant to be. Frankly, for your age you've been caught incredibly early, so with good specialist follow up you will probably do well. The one thing my doctor did do for a long, long time though was put me permanently on the pill. I did that for years and years. It really managed the symptoms well. As I got older things seemed to improve immensely. But to give you further hope on the children front. I have a friend interstate who had serious, serious issues with the disease. She too found a great specialist and now has two beautiful children. Bear in mind that the treatments will only continue to improve as you get older also. My one recommendation though is that you search until you find a really good Gynecologist. I really cannot recommend highly enough finding a specialist.
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Kattss
10 years ago
And have two operations. The operations themselves are laparoscopic day surgery or maybe overnight if you are last on the list. The worst part of the surgery is the weird pain you get in your shoulder from the gas they put in your abdomen for the Laparoscopy... Which is nothing... It's just weird your shoulder hurts the most lol.... After the first surgery I went on a 6 month round of injections that basically make you menopausal which I think stops more forming, then a year after the first surgery, I had another surgery to get any that was left and the doc was pretty sure it was mostly sorted and while I was out to it he inserted a mirena which has kept hormones in check and symptoms down for the past 5 years.... The reason I was diagnosed is that I had large ovarian cysts that had burst and caused and infection in my abdomen on two occasions... So yeah something major had to be done....I also had pain during and after sex and it turned out the reason why, was I had a lot of scarring that basically joined everything to my abdomen wall... Well no wonder it hurt! I think the key to management is getting a good gynaecologist and taking the right measures to manage the symptoms... Such as the mirena etc.... But my doc said the only way they can really tell of the extent or make any improvements is to get in and have a look.... there is certainly nothing to be worried about as far as the operation goes. It sucks, but it is only minor.... And while I was getting the injections that made me menopausal, another girl at my work was having them too while she was fighting breast cancer... We were hot flushing together!! But I could hardly complain after all she was going through. My doctor gave me a great book to read which covers everything about edometriosis and pelvic pain and I still refer to it from time to time to check on something. I'll post the details for you... Now I have no pain after years of plenty of pain... At least you're on top of it early.
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Kattss
10 years ago
"endometriosis and pelvic pain" by Dr Susan Evans with Deborah Bush QSM.............. She is a nz specialist and the book is available from http://www.nzendo.org.nz/how-we-help/resources ....... There is a free book and more information at nzendo.org.nz
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Hottie1
10 years ago
Thankyou for sharing. For over 10 years I had gynaecological issues. A period every two weeks, pain during ovulation and only one or two days in the month that I was even remotely able to think about sex, let alone have sex which was very painful! Diagnosed with fibroids, heavy periods and a number of other things, I was very scared to make the decision of having a hysterectomy (and I'm much older than you ) so my fabulous GP who also has training in gynaecology and works with a major women's hospital here in Melbourne put me on Cyklocapron. Ask you doctor about it and weather it will help you. It has no side effects and in my doctors words has 'saved marriages and carreers'😊 It worked wonders for me and my 15 year old daughter is using it (under doctor's guidance and advice). Maybe this is one way of helping the pain and as a short term solution till you find something that works for you more long term. All the best gorgeous, Mary xx
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nattyocean
10 years ago
ive suffered all my life with debilitating periods, with severe pain, cramping, heavy just plain lock me away it's disgusting periods lol and endometriosis was suspected as a contributing factor. I was not overly concerned about the side effects with regard to infertility in my late 20s as I was convinced I wasn't interested in children etc so wasn't concerned with looking at options. however not long after I had a procedure for cysts which also involved a curette and exploration for endometriosis (not located - but no answer regardless) I met a man who changed my perspective on wanting children. So now after being married and now divorced from that man, with no resulting children having children still is yet to happen and well it may not, my advice based on my personal experience is don't not explore corrective options based on current feelings cause they can change and sometimes cause a whole heaps of feelings that well could be avoided. I wish you all the best Natty xx - Posted from rhpmobile
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RHP User
10 years ago
Yes I have had it (and so did my sister). I have had two operations to remove the growths. During the last operation the Dr put in a Mirena and it has been a godsend. I am on my second Mirena now. My sister did the same and is fine now. Good Luck xxx Pusscat
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RHP User
10 years ago
Ouch! So sorry to hear it, Taby. A friend of mine has had a very rough trot with this condition. She's had some surgery and is waiting to have the major one. My advice is to try to look after your overall well-being as much as possible. When people experience chronic pain, and have to miss out on certain 'normal person' things, it's easy for happiness and self-worth to plummet. Check out the Beppy Sponge if you're concerned about bleeding and there's always switching to more focus on clitoral & anal stimulation if vaginal penetration can be problematic. Maybe using a female condom instead of male condoms might also help act as a barrier to partners against blood? Just quietly, you might be surprised how many men won't mind all that much so long as they know ahead of time, and there will even be a few who find it a bit of a turn on. I've had partners with gynaecological conditions who would bleed without warning, when it wasn't their periods. I never got especially grossed out, I was always just afraid that I'd 'hurt' them. I'm a softie like that. But as long as they weren't in pain, I was up for it!
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RHP User
10 years ago
I believe there are new treatments for endometriosis these days.....with surgery being the best for many. As a little bit of trivia info....the endometrium should just grow as the lining of the uterus. In the case of endometriosis it is found in other parts of the body, generally around the reproductive organs. In extreme cases it can grow around the spinal cord....that is why there is so much pain as it still acts as if in the uterus and swells with blood. My gyno had one patient who had massive nose bleeds with her periods...yep, endometrium cells in her nose!
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RHP User
10 years ago
Position may make some difference to instances of bleeding. Cowgirl seemed to cause bleeding more often than those where gravity wasn't putting extra strain on the female internals.
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RHP User
10 years ago
hi, I was in the Endo club - excruciating pain often. I had it surgically removed and haven't looked back. Of course it can grow back, but I've been clear for almost 2 years (at least, pain free so I assume I'm still clear). It was the best thing I could have done and my only regret is that I didn't take the plunge sooner. My advice is to get a referral to a good gynea and go under the knife. If mine comes back, I won't wait before going back under! Good luck! Inadditionto (Mrs) - Posted from rhpmobile
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RHP User
10 years ago
and just like the other ladies before me my advice to you is to go under the knife - get those nasty cells cut out. That is the best way of getting rid of them (some surgeons burn them off which is only half as effective) whereas the pill will only mask it. I felt that mine was "mild" aside from mild exhaustion and some mild pain from time to time I did not have a lot of issues..until I started going in and out of ER with symptoms of appendicitis, I have lost my appetite for weeks on end but did not have horrible pain episodes, but pain is very subjective.. Getting it cut out by an excision specialist gyno surgeon was one of the best things I ever done - yes it did cost me a small fortune, doing it as a private patient instead of waiting 10months in the public system - but it got rid of it. Some women go on the pill or have further hormone based treatment to prevent it from re-appearing post surgery, this is very much subject to the amount of endo one has etc.
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RHP User
10 years ago
I can HIGHLY recommend Prof. Peter Maher in Melbourne. He is one of the top leading experts in the world in Endometriosis. When my ex had hers removed (she had HUGE growth, even Prof. Maher was surprised) the quality of life improved dramatically after her surgery. Prof Maher doesn't use Laser since the burning tends to leave remnants of Endometriotic tissue that can grow back, he used to use electrified scissors I think for maximum exactness to remove every single tissue. Even if you don't live in Melbourne I'd highly recommend to check out Prof.Maher, he is the best in the field I reckon
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RHP User
10 years ago
Which is usually described as uterine endo. I managed to have two children despite it but I've had several pelvic surgeries for issues over the years also. I feel your pain! I had sex today and now I'm in agony! My whole pelvic region feels like a horse has stood on it. It depends on timing and positions. I have the Mirena, next step is ablation and then hysterectomy. Surgeries can be effective put also cause scar tissue which creates its own issues. Sometimes when I move I feel a huge tearing pain that takes my breath away. And sex feels different now and is sometimes painful. Endo can be very serious and I'm so sorry for anyone who has it. When it attaches to other organs it's not pretty. A few of my friends have it - one had a hysterectomy at 25 because of the severity. It's a case by case basis unfortunately. I've head some good things about acupuncture but it would be dependent on the practitioner. With my condition it's nearly impossible to tell how bad it is until they remove and dissect the whole uterus. They are getting better at picking it up on scans as technology gets better. But because it's between the uterine walls - scoping shows nothing. And as far as playing goes I am investing in beppy sponge shares I think! - Posted from rhpmobile
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RHP User
10 years ago
Doctors go if you want Brisbane Dr Paul Conaghan is amazing!!!!! The Mirena is supposed to help in four out of five cases. The only thing it's done for me is reduce the amount I lose but it's all through the month which makes playing frightful. I will try the beppy sponge though when playing with others. Luckily my hubby and FWB have been cool with it. He said it's highly unlikely I will get relief from ablation given mine is within the walls which sucks. But a partial hysterectomy - taking everything but my ovaries is a big surgery with a long down time. So that's the only reason I haven't done it. I agree with not making rash decisions on the fact that you don't want children. Some people know that under no circumstances ever would they want to. But if you've ever entertained the idea - once you've had such major surgery you can't go back. But lasering may relieve the uterine endo and provide a lot of relief without major consequences. Positions for pain - I find cowgirl, reverse cow girl, doggy, spooning and old fashioned missionary are all good provided the angle is right. Straight in and out is the best. Them trying to get your g spot like they are digging for gold creates after pain for me. And anything position that has you squashing your belly. Bleeding happens with hard fucking, deep fucking and post orgasms. If I've been having a lot of sex, I like the spoon position because it makes hubby go slowly which is gentle and it's usually over faster! Which means there's less chance of bleeding. Angle is the most important thing. With you being on top you have the control. So that might be good when playing? Another one I find that works well for pain and bleeding is him lying on his side and me on my back. One leg goes between his and the other goes up over near his shoulder. I can hold his leg and control the depth and speed. And his cock is going in sideways which puts less pressure on the sides of my pelvis. Hope we've helped a little 😀 - Posted from rhpmobile
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RHP User
10 years ago
I have suffered from Endometriosis, PCOS and other gynaecological ailments since I was a late teen. When I first had to undergo treatment at the age of 18-19, the oral medication made me put on 19-20 kgs within a year! I felt so ashamed and ugly that I hid at home and avoided all my friends. As a late teen, my self-esteem plummeted and I sank into depression because I felt so inferior. It was made worse by the stark reality that I used to have men try to chat me up in all sorts of situations but the minute the weight piled on because of the hormonal treatment, no guy would give me a second glance. My mum had it too but not as severe as myself and because I believe there is a genetic / hereditary link to these diseases, I made a decision to not have children because I cannot bear the thought of passing on the faulty genes and watching my kids suffer. (Boys can pass on the gene to their female offspring.) I still have weight issues and with PCOS etc, weight is extremely hard to shift. So recently, when I managed to lose 10 kgs in 8 months, I was ecstatic! I have decided to love myself, tubby bits included, because I finally managed to arise like a Phoenix out of the ashes. Depression commonly follows chronic illnesses or diseases that alter your physical appearance like abdominal bloating, weight increase, etc. Now, I am proud that I have managed to live a rather normal life despite battling with so many diseases and truth be told, if I do not reveal it, no one actually knows that I am ill and when they find out, they are all stunned! "How do you manage to live so well with all these illnesses?" I count my blessings, and I am thankful and grateful for every little thing these days. Everyday that I arise and am not bent over with pain or extreme exhaustion is a triumphant day for me. I am a survivor and a fighter, but I couldn't have done it without my supportive friends. I hope that you will not be alone in your journey. It can be arduous but with loving friends and family, it makes a huge difference!
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