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Conditions

Endometriosis

Endometriosis

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Around 2 million women in the UK suffer from endometriosis, and although usually diagnosed between the ages of 25 and 40, teenagers can suffer as well. Endometriosis is when cells from the lining of the womb end up elsewhere in the reproductive or digestive system. These cells thicken and bleed just like in the vagina, and on a similar cycle! However, the key problem lies with these cells having no way of leaving the body, therefore causing pain and swelling. Although there is no cure, symptoms can be managed, but if left unchecked there may be difficulty in getting pregnant, and in extreme cases it can lead to organs fusing together. Not nice…

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Last year I was diagnosed with severe endometreosis after suffering for years & never been taking seriously. I got my period when I just turned 10 & always had heavy painful periods. When I was 18 I was vomiting when I got my period, had awful cramps, had both the runs and constipation and once collapsed from the pain of trapped wind . I met my boyfriend when I was 17 and he was my first sexual partner. It was excruciating pain when I first tried to have sex so we put it off as I just thought I needed more time and it was only because it was my first time. Almost 7 years later & I have still never been able to have sex as it is just too excruciating. (I am extremely lucky and grateful to have a patient understanding supportive partner) I was told for so long it was all in my head and it used kill me mentally. Until finally I got diagnosed and finally it wasn't just in my head there was a reason I couldn't have a normal sex life. I was told I need to crack on if I want kids as my chances are slim. My partner doesn't want kids yet but understands my urgency so said if we can conceive naturally then he's happy but there's a problem. I can't have sex. My doctors only way forward was to get in the coil or continue pills back to back so I wouldn't get a period & therefore my Endo wouldn't get worse. I have been off the pill 8 months as I had intended to start trying but every month I try & I try but the pain is too excruciating I just can't do it. It's breaking me down emotionally. I need help but I'm not being guided nor do I have anywhere to turn. All I want is to have a normal sex life like anyone else in their mid 20's & to be able to Concieve naturally. Is there a procedure? Can it be removed to an extent? Is there a pain relief out there in order for me to be able to have a normal sex life with my partner? I'm at the point of severe frustration and sadness from suffering for so long.





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They can do a laparoscopy surgery to remove the endo, I have stage 4 endo and have been in chronic pain for years and was always told it was in my head. Wasn't able to have intercourse, pain is so severe that I'm in pain 3 weeks out of the month. They finally decided to do exploratory surgery and sure enough all my pelvic organs have been fused together, endo all on the lining of my vaginal wall which is why sex was so painful. After surgery and recovery about 6 weeks, noticed my back pain was gone, sex wasn't as uncomfortable and was able to function. Unfortunately endometrosis is a lifelong disease with no cure. I am going for my second surgery in less then a year because it has come back so aggressively. This time following my surgery they have me on visanne, it is the only drug approved soecifically to endo. Hoping with the procedure and the progesterone only medication I will have a normal life. I would ask your doctor to be referred to a specialist and they will most likely so surgery, and request the visanne for after to stop your periods, more effective then birth control. It is a very tough thing to deal with for a lifetime but if you find the right doctor who is knowledgable about endometrosis , you can have hopes for a normal life. Good luck with everything and I hope you find answers soon.

I know exactly how you feel. I too suffered from extremely painful periods from about age 13 and was referred to a specialist who told me there was nothing wrong. I was only diagnosed with severe endometriosis age 37 after my husband and I had difficulty conceiving. I was told I had less than a 1% change of a natural pregnancy and ivf was my only option. We were so lucky to succeed after our first try and now have 5yr old twins. This hasn't sorted my endo though. I have pain at least 3 weeks out of every 4 and feel so tired all the time. I eat healthy and exercise but I don't feel healthy if that makes sense. I think it's a disease that many doctors don't know much about (unless they specialise in the area) so they do the very basic stuff. The important thing for you is to find someone who is used to treating this disease. It's debilitating and nobody can understand how bad it can be when it's at it's worst. Like you I feel extremely uncomfortable during sexual intercourse but my husband has been great and been really gentle. Your not alone.....

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Am sorry l don't know how to put it all down in writing it's am so worried about my 35 year old daughter she has been so Ill for over 3 years now she feels her life is over because the doctors and hospital can not find out what's wrong with her she in in a lot of pain and sick every days she is now so low she feels she can't fight it anymore my grandchildren are now 15 and 12 they think there mum is going to die l think it's because we have had a 3 important people in our life die from cancor even the doctor is now going to change hospitals to see if a fresh pear of eyes can help l just want my strong willed daughter back.





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I am 49 years old and have had a full hysterectomy. I had my 2nd ovary removed in 2008. The surgeon could not get all the tissue and the ovary grew back. A different surgeon then tried again in 2010 to remove it and thought that he had got it all but it has grown back again. He doesn't think more surgery is advisable again because of all the scar tissue and the potential damage that could be done to my bowel or bladder but I am in constant pain and need this to end. Help!!!!





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All cases are different. But I had a lot of success by changing my diet. Maybe you could try the endo diet. Please look in to it. And I hope you get better soon.

All cases are different. But I had a lot of success by changing my diet. Maybe you could try the endo diet. Please look in to it. And I hope you get better soon.

hi I have had severe endometriosis since I was 15 yrs old I am now thirty two kids later and I am still suffering severly from it. I am considdering a histrectomy but I am alredy over weight and with my hormone inbalance I am scared it will get worse I I will pick up even more weight as my male hormone count is almost 18 please help





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this has only happened to me 3 times before but the most recent time, I was due my period and i took a severe pain in my stomach & got into the shower but had to sit on the floor and crawl out of the shower the pain was that bad, while I was sitting there I started dry heaving with the pain, before i started to stand up then i collapsed and blacked out until someone found me. for an hour after that, the pain was in my stomach and my uterus, it kept getting to a 9 on the pain scale and then dulling to about a 4. the pain fluctuated for about an hour until it went away completely and then i was fine again. Any idea why this has happened? it has only started the past year.





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I watched the show around 3rd/4th of october and a woman was on with pains constantly representing period pains everyday but no period, I am having these pains and some days i cant even get out of bed or walk its that painful. I have had ultra sounds and the doctors don't know what is wrong with me they dont think is it endometriosis but im sure its ovarian something I'm only 16 and I really want someone to help me go back to living normal. Please help me.





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I experienced symptoms like yours and like you went for scans, I also had my appendix removed as doctors thought that may be causing my pain, a year later at age 15 I was diagnosed with endometriosis and now at 17 I'm still suffering but doctors are working hard to try and relieve my pain, for me the diagnosis was the hardest part so just push the fact youre not too young to have endometriosis and hopefully someone will listen. I hope you sort it out :)

Hi, i'm 19 years old and have just recently been diagnosed with Endometriosis. I have been back and forwards to the GP about having foul vaginal smell especially after sex. I have had swabs taken and they all came back.I was just wondering if Endometriosis could have anything to do with foul vaginal smelling?





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Sounds like bacterial vaginosis.

Hi all i am 37 i have endro had it now for 4yrs thay can't do an opp on me as I'm elgick to the meds thay give u while ur on the table iv nor been on a period now for 7weeks my tummy is swollen iv got realy bad pains in back an tum i can't move off the sofa it hurts when i go to the bath room pregnancy tests come back clear blood pressure is up alittle when i eat i feel full and sick doctors just give me pain killers and said rest.





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I am 17 years old and have not had a period for 4 months, my pregnancy test and blood test have both come back negative. However my belly has swollen, my breasts have enlarged and I have morning sickness. I don't know what it could be as all of my bloods are normal?





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Hi. Im 24 years old. Ive been suffering with servere pain in the collarbone region and rib area during my period. I know wen im due on coz ill start with a dull ache in these areas. Then the first day im on my period i get immense pain in these areas aswell as severe period cramps. My pain only last a few days of my period and its gone till the next time im on my period. Could this b endometriosis?





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Content supplied by NHS Choices

Endometriosis is a common condition in which small pieces of the womb lining (the endometrium) are found outside the womb. This could be in the fallopian tubes, ovaries, bladder, bowel, vagina or rectum. Read More »

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