MY STORY---basically is that I've experienced endo pain/problems since I was 14 at 15 I was put on the pill and was advised my symptoms were normal due to hormones I had symptoms on and off for years and kept getting told I was having adverse reactions to my pill and they kept swapping and changing me and told me they just had to find the right one in 2011 my symptoms dramatically changed they became a million times worse my periods were so heavy I was flooding and collapsing I had abdominal pain everyday severe pain during sex and I finally went to docs end of October 2011 and only reason they listened was because I told them ovarian cancer runs in my family I was rushed in for a scan to rule out cancer after tests they finally referred me to gynea I 1st met my gynea jan 2012 and was initially put on a special pill even though he didn't truly know what was wrong then April 2012 due to no change I had a lap procedure I was told I had severe endo completely covering inside and outside of womb, all around my bladder and bowel and it was extremely built up so much so he couldn't remove any of it his solution was hysterectomy I was 22 years old and newly wed of 6months!! It shattered our world I left hospital told there was nothing they could do for me and to continue taking pain killers I eventually asked for a new consultant and in oct 2012 I had a coil fitted and due to the fact this wasn't doing much in March 2013 I was put on 6 months of zoladex which is a menopause treatment had a check up afterwards and was told to see how everything settled down but my daily pain is slowly creeping back so I think it's failed a possible 2nd lap may need to be done but not looking great for me on the baby side of things but have been advised despite having a condition I have to try naturally for a year but they can't recommend that until I'm in less pain so it's catch 22 and I have a less than 3% chance of conceiving and time isn't on my side as it's obviously spreading I'm now 24 but I'm still going and still fighting I have bad days and very sad days but being a young woman with this condition is hard so I would love support and to give others support xx
Feeling lonely,fed up and in need of chat... - Endometriosis UK
Feeling lonely,fed up and in need of chat with those who understand ...
I've been dealing with endo since I was 12 it got worse at 20. I'm now 31 and about to get married. Depression is very common I know at least for me I get in these moods of feeling so down and helpless. Relationships were very hard for me to maintain along with every other thing in my life. It effects everything and sometimes you feel as if it becomes your identity almost. Your not alone
Hi thanks for commenting I'm sorry to hear of your struggles too 
I tried to push my husband away told him I wouldn't hate him for leaving he's the same age as me I begged him to leave right at the start said that would be easier than him leaving further down the line but he hung on bless him although I can see the hurt and disappointment in his eyes everyday and it's hard cos we never talk about it he's not much of a talker so I bottle it up always feels there's an elephant in the room but I'm sure we'll get through it what will be will be congratulations on your soon to be wedding I really hope u get all u want and deserve 
and thank u so much for your kind words xx
Oh sweetie that's awful, docs are rubbish!! I had the same problems as you and got diagnosed at 15. They told me too that I couldn't have children. After 12years of treatment ranging from the pill, laps, splitting adhesions, prostap injections and 2 coils I now have a gorgeous 1 year old. Hang in there and keep pushing them for help. X
Wow u have been through it but I bet it's all worthwhile now u have a little one congratulations u won your fight I can't wait to have that feeling!! Thanks for your kind words I'm not one to give up haha can't can to when so much is at stake xx
Goodness me, you're really going through it. I'm so sorry, it must be particularly tough for you, given your age. I would strongly advise that you seek help from an Endometriosis Specialist Centre. A hysterectomy is not a cure for endometriosis although it does help in a lot of cases. The Zoladex is a good test of how you'll be following a hysterectomy. I'm 9 weeks post hyster. Zoladex worked for me so I'm hopeful for the long term. Best wishes to you, get referred xx
Thank u for your advice I will look into the centres, I've had the added stress of a thyroid condition which has made me very poorly and also causes infertility but that's beginning to come under control took them 5 months to diagnose me due to fact the symptoms were very similar to those on menopause treatment now we know I didn't react to treatment but to an additional condition I was pain free in abdomen for 3 months after coming off zoladex but the last 2&1/2 months the pains crept back and progressively got worse almost back everyday I really hope this isn't the case for u, good luck!! Xx
Don't give up I know exactly how you feel, I have severe endo and was told the same as you a less than 3 percent chance of concieving I also had the added problem of my partner having a low sperm count. I was told I would never concieve naturally and would need ivf but at 36 I discovered that I was pregnant naturally. Its hard when you're on so much pain and tired sex is the last thing you feel like doing! I took 3 weeks off work and just slept and I'm convinced that's what helped. I've been trying for baby number 2 for 2 and1/2 years with no success I've told the same again I'll only concieve with IVF and I can't afford £6500 pounds a d I m 40 in 2 weeks, but I'm not giving up I refuse to let endo get the better of me! I hope your pain is sorted soon and you get your little miracle. X
Thank u so much for your kind words and support and congratulations on beating this condition once and getting a little one I would also like 2 children so we shall see we have no idea about my partner yet but fingers crossed I recently got diagnosed with a thyroid condition too which causes infertility so been advised my odds are even less now but what will be will be, I can't afford ivf either so hope I don't need it but it's been mentioned good luck to u and I hope u receive another miracle xx
Hi Hun,
You are not alone, don't forfeiture, get on this site and shout for support x everyone on here will be there to listen!
You must be strong to get through what you have so far so don't forget that! Don't give up the fight!
Big hugs
Xxx
Thank u so much your comment has hit the me hardest got me all emotional although that's a given nowadays thank u for recognising my struggle no1 in my life has but probably cos they don't understand but sometimes it's so frustrating I was recently given further bad news of having a thyroid condition which also causes infertility so that got me down for a while but I've picked myself back up and I will fight this till I win and get my miracle .... Thank u xx
Hey, yeah I think nit only do people who haven't suffered not understand the condition it's the loneliness and depression that gets you. I can totally sympathise with you! But you do sound strong and you WILL get through this as you have to. You have to be strong and ready for when your miracle arrives!
Xx
hi I read your story ,I ve heard so much I am on the pain as well I understand you very well
iI thinks its only support just only we can talk together to release the pain thanks
xxxxxxxx
farz
I think it does help to talk about things so I think this site will help I'm overwhelmed with relief thank u for your comment xx
I am with all these ladies - letting it out is sometimes a wonderful cure for the feelings that come with endo, its horrid that its all hormones too because unless you go through it nobody can possibly understand just how sad, low and angry you can feel! I recently received some info from a fellow sufferer on this site which I will forward to you, it may help in your situation - dont let them give you the hysto - its their easy way out but its your life, your womb and it WILL be your baby so dont give up - all of us ladies feel the same and any excuse to have a good old chin-wag about it is welcome! Always feel free to message me if you need to as-well hun, any time of day or night, I did the same as you - I tried to push my other half away, he didnt thank goodness but I think its only natural, keep your head up, your a strong woman who is obviously very loved and you can do this! x
Hi Fullerginge,
I hope you feel less isolated and alone now that you can see other people have written in to say they have had similar experiences. I, too, can empathise. I had really bad period problems as a teenager, but was "fobbed off" by Doctors. No explanation or diagnosis was offered, and I was just sent away and put on the Pill. All that does is mask symptoms!
My periods settled for a while during my twenties - however, I was busy at University, and then in work, so I'll admit that I did not plan to get pregnant in my 20s. I had also had a very bad experience with an ex-boyfriend, who I met at University, and had dated for over 4 years. He had been very unreliable, going from one minute being madly in love with me (I regularly met all his family, and got on well with them - we talked about wedding venues, lived together and planned our engagement), to next minute saying he was too young to settle down, and he wanted a few more years to make a decision! I think he would have strung me along forever, if he could have been permitted to get away with it! I also discovered that he flirted with other women; but when I spoke to other guys, he got really possessive! After my negative experience with this idiot, I decided that I'd take any further relationships slowly, and thus decided that I would not rush into marriage and kids.
Fortunately, I was lucky enough to meet the man who is now my husband, on a New Year's Eve night out (of all things!). It's just been a pity that since meeting him, my menstrual problems have returned with a vengeance, and I have been unable to conceive. Really BAD symptoms began again around 2002. Heavy and painful irregular periods, bloating, cramps, nausea, upset stomach, abdominal and pelvic pain, lower back pain, lethargy... My G.P. was not exactly pro-active, and I did not get referred to Gynae until 2006.
Oh, nightmare! My Gynaecologist was absolutely USELESS AND INCOMPETENT! I went to him well-prepared, and with a list of symptoms (which I doubt he even listened to). First, he mis-diagnosed me as having Polycystic Ovaries. Then he failed to give me any treatment. He was rarely present at appointments, even though they were supposed to be with him. He yet again just wanted to get me to take the Pill, and go away. He even wrote in my medical notes that the reason I could not get pregnant was ANXIETY! I mean! Since when did anxiety give anyone heavy periods, water retention and anaemia? I ask you ! The only thing in my life at the time that made me anxious, ironically, was HIM!
In 2008 I had a hysteroscopy with D&C, and a Colonoscopy with biopsy (only because a Junior Doctor made the suggestion). By this time I was in lots of pain, suffered fatigue, diarrhoea and very heavy periods (sometimes making me faint). Following these procedures I was told I didn't have PCOS, but I was told I just had "menorrhagia" (heavy periods - duh - state the OBVIOUS!). I was fobbed off yet again with the Mirena Coil.
OMG! The Mirena was a MARE! Insertion was AGONIZING. Then, my body clearly started to reject it (I literally felt it shifting on occasions). I had dreadful cramps, spotting, and flooding. HUGELY EMBARRASSING, especially at work or out with friends and family! I demanded the Mirena out after less than 6 months. My G.P. was NOT happy, and tried to insist that I keep trying with it. How much pain do they expect you to take?
In 2010 I demanded a second opinion off a less rubbish Gynaecologist. The response was they suspected Endo. I had a lap in early 2011 that confirmed it. Since then I have had 2 further laps, and am due to have a fourth in march this year. I am now under the care of a FAR BETTER Gynaecologist... but I still feel let down, and upset.
I have discovered in my medical notes that Endo was suspected as far back as 2008, but nobody acted on the suspicion, or checked me out. At least 2 letters exist (one from my Doctor who did the Colonoscopy, and one from the Doctor who did the Hysteroscopy) that say Endo may have been at the cause of my symptoms. Yet these letters were just filed, overlooked and ignored.
Meanwhile, I had to put up with awful symptoms, and try to live my life. I was constantly bullied at work because of illness, and needing time off to attend medical appointments. My employers made me feel like a total nuisance! I also gave up on many of my hobbies - I stopped going to Aerobics and Horseriding because of my pain and fatigue. I stopped going hillwalking with my husband. I quit swimming and mountain-biking - ALL because of my Endo symptoms. Worst of all, I lost my fertility.
I think if I had been taken seriously, and had my symptoms acted on sooner, I would NOT be in this position now. Doctors can be incredibly ignorant at times. I cannot begin to list the number of times I had to listen to them saying "it's just period pain", "it's in your head", or trying to imply that I was lazy, a Hypochondriac, or "crazy". I often felt like I was seen as a "liar".
I guess you just have to be REALLY TOUGH and DETERMINED to get through. I have this attitude now that if I decide to go for something then NOTHING gets in my way. I have returned to University, and am doing Postgraduate study (Psychology). I've been incredibly fortunate there, and have found that not everyone is unsupportive. My Tutors are great - I can talk about my illness with them, and they try to help me find ways to cope with it, and still complete my course. My hubby is a good man, too. He does not always understand; but he always comes to all the appointments with me, and tried to get his head around things. He encourages me to do things I enjoy, and has been very supportive of my return to studying (he keeps joking that he will boast to everyone once I have completed the course that his wife is a Doctor, with a PHD!). He helps with housework, especially if I am feeling ill. He encourages me to find new activities, and things we can do together - so, I CAN'T go to the gym any more, but I can go to Museums, or the Theatre, or for gentle walks round National Trust properties... It's all about changing the way you look at things.
Endo is NOT a pleasant disease to deal with. However, YOU can regain control of it. Once you feel YOU have control, and not the Endo, you are part way there! It's a huge confidence boost! Just try to find ways of making sure it DOES NOT STOP YOU... and remember YOU ARE NOT ALONE. There are others, like me, and the women who ave responded to your post, who understand.
I am going to send you another reply, in which I have written a list of the things I do to try and manage my Endo. It may contain something useful, or not... don't feel you have to act on any of my advice or suggestions... they ARE just my opinion, so they may not work for you. However, if they look like they might, it is up to YOU to decide on the best treatment and methods to cope with your Endo. The idea is for YOU to be firmly in control, and making decisions for yourself.
Whatever you decide, I wish you all the very best. Take care of yourself...
Regards,
Elaine Ellis.
Hi again,
Here's the second response I promised... It's a little lengthy, so do bear with it!
Anyway, please, please do NOT ever feel like you are alone in what you experience. That is the sad thing about chronic and invisible illnesses - they make people feel isolated. It is so easy to feel caught up in what is happening to you, and to let the rest of the world slip by. I think that's the BIG problem with chronic/invisible illness like Endo - it sort of "cuts you off". You stop being who you used to be, and become somebody who struggles every day to cope with the illness. It's like "treading water". People see YOU on the surface, and you still look pretty much like you; but underneath the surface of your life, you are frantically working ever so hard just to be able to do the things you used to do with ease!
By the way... THAT'S how I see Endo. A CHRONIC & INVISIBLE ILLNESS. The person with it KNOWS it's ALWAYS there, but NOBODY else does! Still, I've learned that there ARE ways around things. The INTERNET can be your BEST FRIEND!
For what it's worth (and this is only my opinion, so you don't have to act on any advice if you don't wish to), might I make a few suggestions:
1. You NEED a good G.P. I cannot stress enough the importance of this! All I can suggest is that being "bossy" sometimes pays off. When you have to book an appointment, explain clearly that you want to see THE SAME G.P. because you have a LONG TERM illness, and you NEED consistency. Explain the nuisance it causes when each time you see someone new, you are "back at square one". If all else fails, threaten to complain (this should be a last measure, because it's far better to politely negotiate) as it MAY get the surgery to take notice! Otherwise, you could consider changing G.P. and looking for a surgery that only has one (or a limited number) of Doctors. If you do want to change G.P. surgery, try contacting your Local Care Trust (NHS) for details of surgeries in your area. You can probably find their telephone number in the phone book, or online.
2. Asking to be referred to a Gynaecologist who knows a lot about Endo, or to an Endo Specialist, is a very good idea. Many Gynaecologists (and this is personal experience!) seem to be "jack of all trades, master of none"! They hardly seem to have heard of Endo, and appear to be out of their depth when dealing with it. After all the problems I had with my Gynaecologists, I did a search online (try Google or Yahoo, and type in Endometriosis Specialists London Area) to find the specialist centre I now attend. It was then a case of DEMANDING (and I mean DEMANDING) that my G.P. refer me. To make this sort of request/demand, it is a good idea to have an "action plan". Arrange an appointment with your G.P. and take notes with you, explaining how your Endo affects you, why you feel it is not well managed at present, and how you think you may benefit from being under the care of a specialist.
3. If you feel you are getting nowhere, you could always try going Private. Sometimes, Private Healthcare is better. You get seen quicker, and can often get treatment the NHS is reluctant to offer (as well as better treatment). Something to consider, if you have the money!
4. Get CLUED UP, and DON'T be afraid to show it. Here's my personal experience again! I have found that some Doctors can be VERY arrogant. They treat patients like they are stupid - like the Doctor is more intelligent, and always know best. "Playing God", I call it! Doctors like these are a waste of time. PATIENTS ARE NOT THERE TO MASSAGE A DOCTOR'S EGO! You need a good relationship with your Doctors; you need to feel that you can openly and honestly discuss things, and that you get told all the risks and treatment options. You need to have a Doctor who accepts that YOU know your own body best, so YOU may be able to tell them things that THEY were not aware of. Sadly, lots of Doctors seem to know little about Endo. So, it is a good idea for you to read up on it. Ask questions. Take notes. Some Doctors will even accept you bringing info about Endo for THEM! Know your rights, and know your stuff. And refuse to back down if you think a Doctor is wrong, or no good.
5. Keep a SYMPTOM DIARY. This can be VERY helpful, as it keeps track of a LOAD of information that otherwise you may forget. You can also take your symptom diary to appointments with you (which is useful, as you then have all your info to hand). Your symptom diary can record such things as when your periods are, and how bad or heavy they are (useful to help you spot any irregularities, or changes). Record other things, like daily pain levels, tiredness, as well as further symptoms such as bloating, nausea, etc. These should be your Endo symptoms - and by recording them in your diary, you can keep track of what they are, when they occur, when they are worst, and any changes or new symptoms. You also need to record other things in your diary - symptoms that are not clearly your Endo. So, if you get a nasty infection, write it in your diary. Again, this helps you to spot when such things are happening, and you may start to recognise patterns, if they exist. This could give you an even better clue as to whether it is your Endo that is making you infection prone. Keep a record of mood swings too, to see if they are Endo related, or maybe due to fatigue.
6. Try to keep yourself as healthy as possible, and keep up with the things in your life you wish to do. I KNOW this sounds easier than it actually is... however, the last thing you want is to feel that the Endo is in charge of you! By eating sensibly, trying to take exercise when you can, and keeping up a relatively "normal" (hate that word, what is "normal", after all?) life, YOU stay in control. You are giving yourself the best possible chance. There is information about a special "Endo Diet" online (it tends to look at removing processed foods). Gentle exercise like Pilates or Yoga, or just gentle walking, can help stretch out achy body areas - and just get you feeling a bit more "perked up" (exercise = natural endorphins). Don't overdo things - make sure you give yourself "me time". You know, just "chillin" and relaxing - a nice long bath, or a snuggle with your family or pets, or unwinding on the sofa with a movie - anything that makes YOU happy. SELFISH IS ALLOWED occasionally. I say this, because many people with long term illnesses seem to forget about time for themselves; they are so busy feeling ill, and feeling guilty for being ill, that they start to think that time spent on themselves is "selfish". It is NOT! "Time out" is REALLY important to "recharge your batteries"!
7. Support network is important. Try to get the help and understanding of family and friends. EMPLOYERS can be downright crass! Most are totally ignorant about Endo. The charity Endometriosis UK produce a booklet that you can download and give to your employers. Again, it is important to know your rights. Your employer COULD be guilty of discriminating against you, if you have a long term health condition but are being punished at work for this. Speak to ACAS, or your Union (if you are a member) about it. Support groups can be useful too, if that's your kind of thing. Maybe you could look online for ones in your area?
8. Just a few other "odds and ends"... Peppermint tea, and Ginger tea, I've found good for bloating. Peppermint tea is a natural diuretic (helps with water retention; makes you pee!). Ginger aids digestion. Foods like ginger and garlic can boost the immune system. Spinach and broccoli, as well as pulses (beans/lentils/peas) can be good sources of extra iron if you are anaemic. Processed foods (junk food) and sugary drinks can be a nightmare; partly because they increase bloating, but also because, if you are "run down" they can feed the "bad" bacteria and other things in the gut, making you feel even more ill. Besides, they can cause weight gain, and with Endo this can be a problem in its own right, because many of the so-called "Endo treatments" (the Pill, the Mirena, Hormone Treatment) cause weight gain, too. Steam inhalations can be good for sinus and respiratory problems - try putting in a few drops of Tea Tree or Rosemary oil, as these have antiseptic and antifungal properties.
9. Fatigue can be a pain! However, do not let it get you down. Try to find ways that you can regain control. Perhaps pacing yourself when doing activities (this is a good tip I learned from M.E. sufferers). Do not expect to get things done as quickly as you used to; and DO NOT punish yourself for this. Instead, work out at what point during an activity you start to feel fatigued. This is like a "cut off" point. Don't push yourself beyond it, instead rest and recuperate. You can also learn to "stagger" activities, taking short rest breaks inbetween periods of activity. So, if, for example, you are vacuuming your house, and find it tiring to do the whole house in one go, just do a room at a time, taking breaks as you go along.
Blimey! (You can tell I'm Northern!!) - very sorry that this is such a LONG reply! Anyway, that's pretty much it. I truly hope that you find some relief from your symptoms. Do not give up. Remember, there are always people better off than you, and always people worse off. That's life! Just know that there are some people who struggle to cope with stuff that is NOTHING compared to Endo; so YOU are a pretty GOOD coper, really.
I shall stop here, as I'm probably in danger of seriously boring you! Wishing you all the best... and if you ever want to e-mail (elaine-ellis1@hotmail.co.uk), or keep regularly in touch, feel free.
Take care,
Elaine Ellis.
P.S. Just a few useful contacts:
1. ACAS (info about work, rights, and illness/disability) - telephone 08457 474747.
2. Endometriosis UK (charity, provide LOTS of info on Endo, treatment, etc, including info for medical professionals, and employers) - endometriosis-uk.org . They also have a Helpline (look online for opening times) telephone 0808 808 2227. You could even download a handbook from their list of publications to take to work with you to help explain your Endo.
3. Endometriosis diet - endo-resolved.com/diet....
HOPE some of this helps you. Best wishes and good luck!
(Hell! I AM bossy! I'm a Social Worker and Psychologist by training!) SORRY!!
What a wonderful supportive reply! Very empowering. You have been through so much and yet appear to be the ultimate survivor who will not let this awful disease take over your entire existence. I wish you the very best of luck with your studies and hope that you continue to get your strength from your future successes! And your hubby sounds a guy in a million!!!! XXXXX
Hi Bokkie,
Thanks for that. Any encouragement and support is gratefully received. I try to do a good job, and survive... sometimes it just feels more like "scraping through"! I guess that's just down to perspective. When YOU are the one dealing with something, sometimes it can feel isolating and overwhelming. I guess it's easy to get caught up in our own issues, isn't it? After all, WE are the ones living them. So... to think that somebody else feels that you are doing OK is pretty reassuring.
It's great to have forums like this, because women can trade and share experiences and advice. That certainly makes you feel less alone. It can also open your eyes to new ways of seeing things, and new solutions to the problem of Endo. I guess that by posting our own experiences, and advice, each and every one of us feels less alone, and also somewhat more empowered. I mean... if each and every one of us shares tips, useful knowledge, our own stories of dealing with Endo... then this website becomes a WEALTH OF KNOWLEDGE... and NOT just knowledge that some Doctor got from a textbook! REAL LIFE KNOWLEDGE... from LIVING, BREATHING WOMEN WHO COPE EVERY DAY WITH ENDO. That's kind of amazing, when you stop to think about it.
After all, many of the greatest discoveries in life are made by everyday people. I mean, Penicillin was discovered completely by accident...
So, thanks for your support. It's the people writing in that keep this forum alive.
Best wishes,
Elaine Ellis.
P.s. Hubby is a GREAT guy... but best not to tell him TOO often... It goes to his head!!
Awww, I am so very sorry. I just had a big shocker, the surgery to help end my pain by removing the endo; hasn't helped. This is my first period time since the surgery ( 1 month ago). I feel like I am being ripped alive inside. If I hadn't seen the pictures, I would have never guessed she went in there at all. And on top of that, my insurance company is fighting against me for the Lupron shot. It's been a MONTH since my surgery. Everyone is passing the buck. So I called the pharmacy today (after waiting the appropriate time they told me to) and they STILL don't have it completely approved. I called my dr.'s office (and nearly cried to the poor receptionist) and asked if they could cancel the Lupron, and give me the Depo shot as soon as possible. I have had to take round the clock ibuprofen (too many to really be considered safe), because I can't take Dilaudid and functionally work or drive. I have just called off work yesterday, which I hate doing. And have spent most of my past 2 days curled up in bed trying not to throw up from the pain.
Hi I have been dealing with it for about 7 to 8 years now I totally understand and know how you feel,you really do have to think positive on the baby side of things it will happen, you have to believe that otherwise that can make you spiral into an even more lonely place. The docs will get there I just think it's a lot more complexed than we all think as everyone is unique and try hard to stay positive I really hope it all gets sorted for you.
There are a lot of here together. Listening and hoping things will get better for all of us. I hope you are feeling a bit brighter after all of these replies. X
Feeling so fed up!
Fobbed off and fed up
Fed up and tired
Fed up of pain!
