Suspected endometriosis

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Hi guys. Just wanted to share my story of what I've been going through and hopefully get some advice because I feel very confused/angry at the moment. I'm 20 years old, I got my first period at 11 and have had problems since day one. I was prescribed microgynon 30 at age 14 to help my periods which I generally got every 2 weeks and lasted up to 14 days. The pain was unbearable and my life felt like hell because of this. The pill subsided things a bit for a year or two and then slowly the full blown pain and other symptoms returned. Apart from this I have developed various other symptoms over time such as frequent urinary tract infections and severe pain all month round. I basically have been dismissed for 9 years because of my age and basically it's just a "bad period" and I need to get over it. I currently take a combination of mefenamic acid and 15/500mg co codomol to try and control the pain. I finally found an understanding GP who suspected endometriosis and referred me to gynae which took a further six months. I had the apointment on Tuesday and I felt like it was a total diaaster. They were again very dismissive and told me that "some people just get pain for no reason" and that I'm so young and have plenty of time because I'm not currently trying to conceive. The doctor said my womb looked very inflamed and had "raw sore looking areas" ?! Which I found slightly alarming but apparently this wasn't an issue.. She also said that she suspects endometriosis but frankly didn't really seem to care and advised me to get the depo provera injection which I have heard nothing but horror stories about and I'm extremely anxious about getting it but I was basically told on the day that if I don't try it they won't help me further. I've switched to different pills a few times to try and control things but every time has been a disaster and made things worse. I feel even more confused & upset than I did before I went! Just really need some advice on what further steps to take. Sorry for the extremely long post. Thanks x

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  • Posted

    Research on the internet about endometriosis and start taking some supplements. I think you were put on birth control pills too soon. For pains I would recommend Cramp Park (especially for premenstrual syndrome pains) and, if you can, castor oil packs, but only if the area is not very inflammed. Take some enzymes such as Serrapeptase or Wobenzym N and change your diet NOW! (no sugar, gluten or cow/sheep diary would be the first rule but there are some others). Research a lot and make a plan of your own.
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  • Posted

    You have no idea how annoyed reading this has made me! I saw my gynecologist with every symptom of endo going and the response I received was "how are your bowels?" yes, the reason i bleed for two weeks straight, cry from pain and have overian cysts is because of my bowel movents... idiot. Its mind blowing how f*cking stupid some well educated specialists can be.

    See your GP again and ask to be referred to a different gynecologist, and insist on a diagnostic laparoscopy. In the mean time....research research research,

    http://endometriosis-uk.org

    This is a great site, please consider calling their help line, they will be able to help and advise you, and sometimes speaking to someone who just "gets it" can help.

    Also there a number of endo related facebook pages, support groups etc which may help, even if its just to vent your frustrations.

    Hope this helps! Your story reads very similar to my own and I really feel for you x

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    • Posted

      I almost feel like a fraud now. I've been fobbed off so many times I'm truly starting to believe it's all in my head. This situation has made me feel so low & depressed, I'm 20 years old and I feel like my life is being robbed from me. I'm in so much pain that's getting worse with time usually all I feel capable of doing is sitting at home. I've had to take time off my job etc. sad x
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  • Posted

    I have symptoms like you. I am 23 right now. My period started at a young age, and at first, everything was fine. As the years went on, the pain started to get worse and worse.  I consulted my doctors many times on the cause of the worsening pain and I got the usual "oh it happens to most girls. You have nothing to worry about. Your cramps will get better as you get older. " By the time I was in high school, the menstrual pain I would get was mind blowing.  No medication would help me. I was on some strong NSAIDs like you and I tried about all natural medications out there as well (fish oil, magnesium,  etc ). The pain was so bad during my period that I had to miss school. I hardly ate and if I did, I would vomit as a result of the pain. By the time I was in college,  I was telling my doctors that something is seriously wrong. I think I am experiencing more than painful periods and they STILL dismissed my concerns. They referred me to an OBGYN who also believed my symptoms were nothing to be concerned about. She prescribed me a low dose of BC. BC did the trick for 1 year max. And then the pain came back again. Believe me! I understand the frustration when doctors don't take you seriously.  Finally, I found an excellent fertility doctor who is also an endocrinologist as well. He believed that something was seriously going on. He was certain I had endometriosis,  but unfortunately,  laparoscopy is the only way to diagnose it. I had my surgery a year ago and found out I had stage 3 endometriosis.  He said he has never seen a 22 year old with such aggressive endometriosis.  I also found out that my ovaries were covered with adhesions and inflammatory cysts. Also, through blood tests, I found that my progesterone fell very low during a part of my cycle. Basically,  it was SUCH a frustrating journey to get to the doctor I am with now. It feels good to know when a doctor take you seriously. I know now why no medication worked for me and I know the pain was not  in my head. In my opinion,  you need to get another doctor as soon as possible. Any doctor who doesn't take your symptoms seriously is an idiot. My OBGYN said if I had waited 6 more months, i would have progressed to stage 4 endometriosis.  When you find a good doctor,  schedule a laparoscopy.  It is minimally invasive surgery and you recover fast from it. That is the only way you will know if you have endometriosis.  Ask for ultrasounds to be done before your surgery because transvaginal ultrasounds will show if you have cysts, fibroids, abnormally thick uterine lining, etc. Medication only does so much but it does not make the problem go away. Hope that helps!  Good luck
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  • Posted

    I have symptoms like you. I am 23 right now. My period started at a young age, and at first, everything was fine. As the years went on, the pain started to get worse and worse.  I consulted my doctors many times on the cause of the worsening pain and I got the usual "oh it happens to most girls. You have nothing to worry about. Your cramps will get better as you get older. " By the time I was in high school, the menstrual pain I would get was mind blowing.  No medication would help me. I was on some strong NSAIDs like you and I tried about all natural medications out there as well (fish oil, magnesium,  etc ). The pain was so bad during my period that I had to miss school. I hardly ate and if I did, I would vomit as a result of the pain. By the time I was in college,  I was telling my doctors that something is seriously wrong. I think I am experiencing more than painful periods and they STILL dismissed my concerns. They referred me to an OBGYN who also believed my symptoms were nothing to be concerned about. She prescribed me a low dose of BC. BC did the trick for 1 year max. And then the pain came back again. Believe me! I understand the frustration when doctors don't take you seriously.  Finally, I found an excellent fertility doctor who is also an endocrinologist as well. He believed that something was seriously going on. He was certain I had endometriosis,  but unfortunately,  laparoscopy is the only way to diagnose it. I had my surgery a year ago and found out I had stage 3 endometriosis.  He said he has never seen a 22 year old with such aggressive endometriosis.  I also found out that my ovaries were covered with adhesions and inflammatory cysts. Also, through blood tests, I found that my progesterone fell very low during a part of my cycle. Basically,  it was SUCH a frustrating journey to get to the doctor I am with now. It feels good to know when a doctor take you seriously. I know now why no medication worked for me and I know the pain was not  in my head. In my opinion,  you need to get another doctor as soon as possible. Any doctor who doesn't take your symptoms seriously is an idiot. My OBGYN said if I had waited 6 more months, i would have progressed to stage 4 endometriosis.  When you find a good doctor,  schedule a laparoscopy.  It is minimally invasive surgery and you recover fast from it. That is the only way you will know if you have endometriosis.  Ask for ultrasounds to be done before your surgery because transvaginal ultrasounds will show if you have cysts, fibroids, abnormally thick uterine lining, etc. Medication only does so much but it does not make the problem go away. Hope that helps!  Good luck

    Also whatever you do, don't start the depo injections. 

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    • Posted

      I had a TV scan at the apointment and she said everything looked healthy except my womb was "inflamed with raw sore looking parts" those were her exact words. I found this very alarming and not at all "healthy" but she didn't really seem to care or follow it up because there was no sign of infection. It sounds awful but I actually wanted to punch the nurse who was in the room with me. She was so patronising and must have mentioned my age and "you're so young" about ten times. And also the doctor said that she believes I have endo but doesn't really seem to care about finding out because "it's not like you're 38 and trying to have a baby so you have plenty of time on your side." Again her exact words.. I'm so disgusted and angry with the way I was spoken to. I'm not really sure what further steps to take now other than to go back to my GP and tell her how I feel? 
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    • Posted

      That does not sound normal to me. I would be alarmed also and really upset if any nurse, doctor, etc was patronizing to me. The worst feeling is when you think it's all in your head at the end of the day. My advice is trust your body because you know it best. I trusted my instincts. If you feel like something is off, I suggest do some research on gynecologists in your area. See who has good reviews , distinctions,  who has good expertise in this area, and most of all, make sure they have been practicing in this discipline  for quite some while (like 10+ years). That's how I found mine.  I drive over an hour to see my gynecologist, but it is worth it. I trust him with my life. If you don't like who your GP recommends, see if you can find someone better. I got the "your to young " comment so many times also. I can't even keep track of how many times I switched doctors, but I needed someone who took me seriously, regardless of my age. If your TV came out fine, that is great news if there were no cysts, etc seen. But unfortunately,  if you do have endometriosis,  the only way to know is to have surgery (because symptoms differ in each person). The doctor who said you don't have to worry because you are not getting pregnant is wrong!!! Again, some women can go through life with endometriosis,  have children,  and never know it. For other women, endometriosis can get worse each year, cause irreversible damage and p permanent infertility. Also, relating to pain, each person is different. Again, some feel no pain at all and some  feel a lot. If you do have it, then you can fall in either category. I say do some research at the moment and see what you find!  Hope that helps! 
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  • Posted

    I am 32 years old and I am battling endometriosis for many years...I wrote a book about this (supplements that I take based on studies and my experience, diet guidelines, etc - it is not the whole thing, but it might help you. ) If you can give me your emails through private emails I will send it to you.
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  • Posted

    I had a simular problem, i started my periods early (10yrs old) and had problems all the time.  I had my first smear at 18 due to the pains as they thought i had got an std even though i tried telling them i didnt sleep around they ignored me.  It took me 2yrs to get anyone to listen and ended up going private and even then they didnt beleive me.  In 2004 i had my first operation and got an apology from the surgen as he said it he didnt beleive me and that i was putting it on, after taking me down he saw how bad the it was and removed as much as possible but couldnt get rid of all of it.

    Its been a constand battle and i hae had 2 more operations since, and been back today as im still getting the pains, the only thing you can do is keep pushing them to take you seriously.  The only option my docotr told me to do is have a baby!  Which they told me would be difficult but would sort the probelm, not the best advise to give an 18 year old.

     I hope this helps and that you get the help you need but don't let them fobb you off as they will keep using the age card 

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    • Posted

      My story is abit the same. I have been suffering with pain for the past four and a half years. I have chronic pelvic pain al the time, especially before my cycle it gets worse during my cycle then settles towards the end but then starts back up after my cycle is finished and last for days. Basically I get pain everyday I would be really lucky if I have a day without pain. My periods are crazy sometimes heavy or sometimes very light and very painful also very irregular. I loose my appetite at times, don't have much energy, get angry and get very depressed at days, also sex with my partner was very painful, wich caused a lot off stress on our relationship wich now has come to a end. My GP and GYNI says that my symptoms show that I have endo bt ain't realy doing anything really about it apart frim putn me on the pill. I have been on three dif types of pills: (microgynon 30, Yasmin, and now cerazette) I also get breakthrough bleeding with these pills wich really Anoy me.

      Iv had a laparoscopy but the doc who did my op said that "they didn't find anything so I'm fine but if I get more pain in 6 months come back to them" so they discharged me from their records. I'm like WTH, my consultant is the one that said to me that "even with a laparoscopy Itz not 100%" so how can they say I am fine.

      Wherever I go they say "oh Itz normal" or they try me on a dif pill or just turn me down and say I have a urine infection.

      I am sick an tired of all the docs just pushing and shoving me, I want help and not be treated like I'm some mad attention seeking person.

      Please if u have any advice on anything please reply back to me probly Ur advice could help me and I would be very grateful to u. Thankyou. Hope to hear from you soon. X

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  • Posted

    I read your story and was realy angry and I do feel for you. I myself am going through a lot too. I have been suffering from chronic pelvic pain for the past four 1/2 years. my periods are all crazy and irregular, I also get a lot of pain before my cycle, during my cycle and towards the end. I am in constant pain everyday of the month so just take a gues how many days in a year I would be in pain.

    I have been to my gp who says my symp show I have Endometriosis but my gyni says that Itz hard to tell because they have no solid evidence as it hasn't been seen, so she had put me on the contraceptive pill. I am realy fusterated and angry because I have had a laparoscopy and even though my consultant did say "it's not 100%" I am not being taken seriously, as they say endo is not a illness that can be found very quick.

    I am realy upset and get very depressed I just want to be helped, but no one is really helping me. I am scared for what the future holds for me and the only thing I want more than anything in life is to be a mum. I have done alot if research about endo and it does say that the longer you leave it untreated the more severe it can get, so what I think to myslf is that if the docs or gyni can't tell the way they say to me and it gets worse will they take any responsibility for my future. I don't bloody think so.

    I just want someone to help me and atleast tell me what's wrong with me.

    All I can realy say to u is please don't give up, go to your doc or gyni whoever and don't let them just say anything to u if u have to push and shove do it, u have all the right, because if u ain't going to help yourself get to the bottom of it no one is.

    I don't know if my reply has helped you but I just wanted to share my story with you. Lastly all I want to say is FIGHT because we all have rights.

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