Possible Endometriosis- First hospital app with a specialist.. what to expect?

I have had symptoms of what i believe is endo since my first period at 13. I am now 20 and the symptoms of this are really affecting my life. My symptoms include extreme period pains to the point im sick, Swollen stomach, painful bowel movements, Blood in stools, Diarrhea around my period and constipation the rest of the month, extreme tiredness along with mood swings, painful sex and persistent bacterial infections.

I have made several trips to my GP over the past 7 years and have been fobbed off with pain killers, the pill and laxatives. When last went to my GP i raised the question of Endo and asked for a referral which he reluctantly gave me. I have my first hospital app in November with a gynecologist and was wondering what to expected?

any help would be really appreciated!

thank you

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  • Most likely they will offer you the pill or surgery thats all they CAN offer you... I would make an appointment with a endo specialist or fertility specialist myself.. gynos over looked my endo for years. My fertility specialist finally took me seriously. My last gyno also said I'd loose my ovary from a cyst that was huge inside it if he did surgery. But I naturally got rid of it with supplements confirmed by 2 ultrasounds and a recent lap that did find endo that my last 2 gynos overlooked.. be careful who you trust, research the best drs. Don't just go to anyone. You don't want to waste your precious time. Like so many of the rest of us have going from dr. To dr. Trying to find someone who knew what the heck was wrong with us. Go to the best. You deserve it! Once you get down to what your dealing with remember you have 2 options medical or holistic. Natural remedies work! I'm proof! Research research research! You could try natural first then do surgery for what it doesn't fix. Thats what I did. I got rid of my cyst and many many other symptoms naturally but still wasn't pregnant and still had painful intercourse with my hubby. He found stage 2 endo and some polyps. But I'm glad I tried natural first to at least get rid of the 7cm cyst and educate myself on why these things form and how to keep them away because surgery does not guarantee it will not come back. But lifestyle changes can help make sure they dont come back. Take care!

  • Hi,

    I have just left a comment below with my story. I would be very interested to know what type of life style changes and holistic approaches you have found to ease your symptoms! I am new to this website, I don't know if there is an easier way we can talk? I would love to hear how you have managed!

  • Hi Andrea Clare just wanted to make sure you saw my reply to this below! I'm not sure who all gets an alert when it's replied too.

    Take care!

  • Thank you so much for your message. It really helped! I am going to look into finding a specialist in Endometriosis.

    Its awful how much they mess you about and fob you off like it isnt important! Hope you're doing okay and get the treatment you need!x

  • Hi Nicole,

    I have had the same experience as you, I have had all of the symptoms and really struggled through my teen years with confidence and enjoyment of life because of it l. I was fobbed off for years with the Gp who kept treating me for water infections and testing for STIS. I felt I was unfairly judged because of my age (from 13-21) as I had never had any symptoms of STIS or practiced unsafe sex! I was eventually admitted to hospital as an emergency when I was 21 and saw my first gyne. Ive since had one laparoscopic surgery where I was diagnosed with endo involving my bowels as well, Mri scans, colonoscopys, cysoscopys, various drugs and biopsies, im now due to have my second surgery next week where I may end up with a colostomy bag due to the endo only my bowel.

    My advice for you is to be persistent and don't let them fob you off because of your age! We might be young in terms of endo but that doesn't mean ours is any less severe or less important if we are not thinking of starting a family straight away. Ask to be seen by an endo specialist rather than a gynae as my experience is that the are much more understanding and knowledgable! Good luck xx

  • Hey Andrea thanks a lot for replying. its so nice to feel like someone understands the exact symptoms you are going through!! I think it has a lot to do with my bowels and thats what I am dreading when i go for my appointment. I definetley am going to look into seeing an endo specialist as Im fed up of been fobbed off with pain killers!

    In relation to your other message there arent many ways that I have found to ease my symptoms. Pain killers certainly do not touch the pain for me- i have found myself laid on public toilet floors throwing up because it is that bad - not my finest moments!! I find that hot baths ease the pain however i know that is not easy when at work etc all though a hot water bottle sometimes has a similar effect. For my bowel problems it depends on the time of the month. I use laxatives to ease the constipation but other than that there is little i can do. I have found that a good diet can help however it is hit and miss! please feel free to private message me if you want a chat!!

    thanks again and take care x

  • AndreaClare,

    I am so sorry to hear you have such issues with your bowel ! Lets hope we can avoid that outcome! Bowel issues and endo issues go hand in hand. Most endo sufferers are allergic to wheat/gluten or dairy or both! I suggest you stop eating both of them immediately and this is why, I was allergic to dairy and wheat too and never new it until a holistic dr told me to "STOP EATING THESE FOODS! and when I did, it my life changed. This is probably the most important thing i've learned in the 4 years of my researching and fighting these symptoms naturally. Wheat causes inflammation in the body. Endo causes incredible amounts of inflammation and bloating but your colon can too. I had IBS, the colonoscopies/upper GI's, constant diarrhea, but yet extreme constipation some days, horrible stomach aches, terrible heart burn that burned a hole in my esophagus and of course all the prescriptions to go with it! And guess what ALL OF IT IS GONE now that I eat differently and I take NO MEDS AT ALL! I'm so thankful!! BUT you need to realize the tie here, our bowels are squished up so close to our reproductive systems that when one is upset and inflamed it pushes on the other. So when you stop eating the things that aggravate the bowels your periods and endo pains are alleviated as well. Not to mention wheat inflames ANYTHING that is upset in the body so it causes "flare ups" with endo AND the bowels and MANY other things (but that's beside the point) . Dairy also feeds endo because of the estrogens in it. Research the connection of estrogen dominance and cysts/endo/fibroid/breast issues ect. I could go on for days about how wheat and dairy will cause so many issues and make endo way worse but I want you to try for yourself so you can feel and see the relief!! Just a few days to a week with no dairy and wheat and you will feel a healthy you have never felt before. Pay attention to your pains and bowels. The longer your off it the better you will feel I know this will help you. I went off wheat and dairy 3 yrs ago and I now feel like I never have felt even as a child! I lost 20+ lbs as well. If I get any dairy or wheat in my food my stomach poofs out to look 4 months pregnant. But if you've eaten these things all your life you don't know what normal looks like or feels like. If you are desperate and want to avoid surgery and try this first I would also try to eliminate red meat.. statistics show that the more red meat you consume you are MUCH more likely to have endo. The dairy and wheat eliminated SO MANY symptoms for me, I was really bad off but I recently tried 3 months no red meat. Only chicken and fish and lots of veg and I REALLY noticed even more of a decrease in my pain! Here is a website that explains it: natural-fertility-info.com/...

    The dairy and wheat though are the quicker relief ones to start with. I highly recommend this.

    As for things ive taken to heal my cyst and help my endo my 2 main recommendations are always natpro progesterone cream and wobenzym N

    the progesterone cream balances out the estrogens that cause endo/cysts/fibroids use this AFTER ovulation. A cycle starts on the first day of your period that's day one an average cycle is 28 days if yours is 28 you would start progestone cream on day 15. No sooner or you will mess up your phases and mess up your ovulation. which is important for a healthy cycle.

    wobenzym N is a natural enzyme therapy that breaks down tissues like cysts/endo/fibroids/adhesions that are foreign to the body. its incredible stuff! it helps with inflammation as well and should help with pain. This has to be taken between meals. I find it easiest to take it when I first get up (because I send my hubby off to work and make him breakfast before myself) during the day sometime and before bed assuming you haven't snacked before hand. heres info on how enzyme therapy works for endo : natural-fertility-info.com/...

    if you have any questions just ask

    Blessings! xo =)

  • Hi BellLady,

    Thank you very much for such a comprehensive reply! I try to eat as healthily as possible but Ive noticed that certain acidic fruits and veg, especially tomatoes can cause me a lot of pain! I don't eat red meat and the only dairy I eat is cheese, I was a vegetarian for my childhood and teenage years and still mainly eat vegetarian foods however wheat is something that I eat a lot of so i will eliminate that for a period and see if it helps! I had my surgery just over a week ago now and thankfully the endo, although in the bowel wall, didn't penetrate all of the way through meaning they could remove it without damaging my bowel which is fantastic news! Still very sore so taking it easy and spending my days recovering on the sofa. My dr spoke to me about hormone therapy or swapping my copper coil for a mirena coil however I really don't like the idea of all of the added hormones as they really effect my mental health and wellbeing so I am going to see how I go now lots of the endo has been removed! Thanks again for the advice,

    Andrea

  • I just went through this and didn't prepare enough . So do read the stuff at endometriosis.org and pelvicpain.org.uk . Read your gynae's CV too to understand him. do write down a long list of questions before you go and take it with you , it's easy to get overwhelmed and forget something. There is first consult info at endometriosis.org to help you. Taking a anatomy picture may help too with some of the locations that get talked about. If you don't get offered treatment choices ask him what about x or y to be happy they are ruled out for appropriate reasons for you x x x gynae surgeons tend to treat the case rather than the person. Be aware of that before you start can help you get what you need out of them and not be put off if they approach things in a different way. Hope this helps.

  • Your symptoms and story is the exact same to mine. Had my first period at 13 and am now 20. Went to my endo specialist appt in August and just had my lap on Monday and diagnosed with endo basically everywhere. You should document all of your symptoms so you are able to show this. Are they a endometriosis specialist or just a gynecologist because I suggest you see someone who specializes in this area. Good luck X

  • Mines the same. Im 20yo. I have endo, aswell as cysts in both my ovaries, just had my surgery last tuesday. It took me months of me going a&e n being persistant insisting something is wrong & for them to check. Even for them to finally tell me it was so called blood in my ovary and it would go. Was a releif but i knew it was something else n the pain was unbearable so after going in a few more times the scans revealed it. Be persistant and always trust your gut. X

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