Here is a little bit of my story, i went in to hospital year 2000 with burst ovarian cyst which took 4 days for them to find. Then also they found that i had endometriosis then but didn't tell me or my GP that i had this condition until 2007, so you can guess the hell i went through going to hospital consultant to consultant for years with no answers. i have since then had 13 ops with included my hysterectomy with only 1 ovary left behind for hormones as i have had PE (lung blood clots) in past so couldn't take hormones. I am in real pain everyday which has seen my lose my job as i was a secretary at the local hospital due to the pain in my left arm and neck and chest due to the diaphragmatic endo. i take Morphine daily and lost of other drugs too. They are trying new treatment with me know putting me in medical menopause and put on warfine so i can take hormones for this. I am having my left ovary taken out soon and also having my diaphragm treated also so having two consultations operate on me at same time with a hope of having some pain relief. I am fighting the pension people at the moment as they say that i might be able to go back to work at some point but my chest doctor says not as they cannot fix my left arm or chest. I hope this helps someone out there and if anyone has any advise re neck arm or chest pain please get in touch thanks Claire
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claire56
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Sounds like a nightmare. Could you read my story to see if similar with the order of pain. After reading your story im wondering if Im going that way too.
Hope your ok. Please be in touch. Eould appreicate your advise. Lana05
Just saw your post, and thought that it was a very courageous and big-hearted thing of you to do. The more people are made aware of the diverse effects of Endo (including some of the less common symptoms) the better. Endo is still a very much misunderstood, and under-researched illness; and there are far too many "myths" surrounding it.
Like you, I also have Endo, and have gone through a pretty rotten time. It is a huge concern to me to see that you, like me, were actually WORKING for the health care industry at the time of all your problems - AND to see that this very same health service let you down. It is sad to think that a care service LETS ITS OWN STAFF DOWN. I suppose this is proof that ignorance about Endo can affect even people who are supposed to be qualified care practitioners.
I had menstrual problems as a teenager, but they were never really investigated or explained, and I was simply advised to take the Pill to regulate my periods. This merely masks symptoms, and sadly my symptoms returned with a vengeance @ 2002 (I was 31 by then). I wasn't referred to a Gynaecologist until 2006; it was just a sort of "watch and wait" until then.
My first Gynaecologist is a man I now jokingly call "Mr. Incompetent"; although, to be frank, his lack of care, lack of ability, and lack of polite behaviour was anything but a joke! Fortunately, he is no longer in practice, so he cannot do any more damage to any more women. Still, he managed to get my diagnosis wrong, AND then he failed to provide any treatment. He rarely turned up to appointments that I was supposed to have with him - which meant I was left to see Junior Doctors, or Locums, instead. I had reported a number of very unpleasant symtpoms (including painful and heavy periods; upset stomach; bloating; water retention; lower back and pelvic pain; as well as inability to conceive) to the Gynaecologist at my first appointment. He dismissed all of these, and actually had the cheek to write in my medical notes that I could not get pregnant because of "anxiety". Since when did "anxiety" cause heavy periods, water retention and pelvic inflammation? The ONLY thing in my life causing anxiety was, ironically, HIM!
In 2008, I had a Hysteroscopy and also a Colonoscopy (I was fortunately referred by Junior Doctors) because of my ongoing symptoms, including menstrual problems, as well as bowel-related problems. Following these procedures, I was told I did not have PCOS (my original incorrect diagnosis) - however, I was not given a proper diagnosis, just told it was Menorrgagia and Dysmenorrhea (painful and heavy periods 0 like I didn't know THAT already!). My understanding is that these terms are just SYMPTOMS, and not diagnoses.
In 2010 I sought a desperately needed second opinion after years of agony and inability to conceive. I'd also been seriously bullied at work; made to feel like a malingerer, a hypochondriac and a liar. I was sick to death of my G.P. and my Gynaecologist fobbing me off and trying to tell me my symptoms were all "in my head" and that what I felt was "normal period pain".
My second opinion finally got me some assistance - I had a lap in 2011 and it was confirmed I had Endo (quelle surprise!). Unfortunately, my surgeon failed to accurately remove all the Endo, and so I've had to have further laps (I'm due yet another one on Monday!). I've had both laser ablation and radical excision, as my Endo is of the deep infiltrating variety and was not only on my pelvic tissues, but buried IN them. It was mostly in the POD area, my Utero Sacral Ligaments, bladder and bowel areas. I'm now under an Endometriosis Specialist, after demanding this as I was dissatisfied with the lousy treatment I had previously received. I still don't feel I know the truth about my Endo experience!
Sadly, I've had major reason to complain, as I found out in late 2011. I had requested to see my medical records (an unrelated matter). To my horror, I found in them 2 letters. One from my Gastric surgeon to my Gynaecologist in 2008, and one from the person who did my Hysteroscopy in 2008. BOTH suggested I could have Endo! My Gynaecologist had obviously not read them, or if he had, he'd ignored them! Worse still, my G.P. also had copies of BOTH letters, and had ignored them! NOBODY HAD BOTHERED TO TELL ME!
I can utterly identify with your experiences. I feel that to this day I have not had the truth about my Endo. I am unsure as to how extensive it was/is, and where it was/is. I also feel that not all of my symptoms are listened to. Like you, I have chest pain (right side of chest, extending to right shoulder area). This pain is most noticeable around the time of my periods, and is sharp and very uncomfortable. However, I cannot get anyone to consider the possibility of it being related to my Endo. I have also had to argue for YEARS to explain that my respiratory problems (I have Asthma and Chronic Sinusitis) are exacerbated by my periods. This has only recently been accepted by my Doctors.
I've tried heaven knows how many treatments, including -
Several laps for my Endo (with laser ablation and radical excision)
Mirena device
The Pill (both Dianette and Marvelon)
Painkillers (including Oromorph, Tramadol, Cocodamol, Ibuprofen and Diclofenac)
Anti-spasmodics for cramping (including Buscopan and Spasmonal)
Surgery on my sinuses (including septoplasty and sinus boring out, as well as cauterisation)
Asthma inhalers
Repeated courses of antibiotics for chest and sinus infections
Tens machine
Physiotherapy
Pain Services referral
I'm at a loss as to a definitive answer! I'm now just desperately trying to avoid having to have the hormone injections (GNRH), or a hysterectomy with ovary removal. I have no children, as all of this has got in the way - so these 2 options seem so finite! I'm just "managing" on the brief periods of feeling slightly more "well" that I get in-between laps. I have lost my career as a Social Worker, and am struggling to complete a Postgraduate qualification in Psychology (I had to take a year out from studying due to having 2 surgeries!). Like you, I also struggle to know whether work will ever be fully feasible again.
If only society could truly see what Endo does to the lives of women... At least there is this Forum, to provide some help, shared advice and experiences, and people to listen. It's a start. But SO MUCH MORE NEEDS TO BE DONE.
I truly wish you all the very best, and hope that you receive the help, treatment and support that you so much deserve. Do not ever give up. You are as much entitled to a fulfilling and happy life as anyone - Endo, or no Endo. The trick is not to let the Endo win!
I'll send you another reply, as well, that contains a list of the things I try to do to stay in control of my Endo. It may have something of use to you - who can say? However, I suspect that you are probably far more adept at managing Endo than I am... I'll still send the list just on the offchance. The more things we have to try, the greater the chance of finding something that works.
Here's the second reply I promised, for what it's worth...
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 plus your 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, and see if these coincide with your periods, or whether it is perhaps medication that causes them.
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. If you are studying, Universities and colleges often have Student Support departments where students with personal health problems can get advice and assistance (some even have Disability Advisers). Support groups can be useful too, if that's your kind of thing. Maybe you could look online for ones in your area?
8. If pain, and pain medication are problematic to you, you could ask your G.P. for a referral to a Pain Management Centre/Clinic. These services are usually multidisciplinary teams including Psychologists, Pharmacists, Occupational Therapists, Physiotherapists... and they are designed to meet the needs of people who suffer from long term pain.
9. 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. St. John's Wort can be a good natural aid to help with mood swings. Echinacea is useful to boost a flagging immune system.
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.
Thank you for you information. I have best GP ever been seeing her for 7 years now could not live with out her and i do see my Consultants both private and NHS as hubby has great health insurance. I will keep in touch with updates as ans when they happen once again thank you
Hi Scooteeder thank you for your information!! I've found this very helpful and I just wanted your permission to post this on my endometriosis support group on Facebook to help women out?
I'm new on here and decided to sign up after I ran across this post while searching for answers online, due to lack of help from any doctors. I am 18 years old and have been experiencing chest pain for 7 months and left arm pain for close to a year. I have not been diagnosed with endometriosis but I suspect, once again without medical help, that I do have it. My mom had it and it was thought that her mom had it, but we are unsure die to the lack of medical knowledge back in that time. I have had issues with my period such as severe cramps, heavy flow, and clots. I started having severe lower back pain about 3 years ago that came and went. It is a sharp pain that hits me when I move a certain way and in some cases makes me loterally drop to the floor before it will stop. Since June I have been in and out of doctors and hospitals trying to figure out what is going on. They have checked my gall bladder, tried me on stomach pills for the chance of it being GERD, checked for kidney infections, and I have taken several trips to the cardiologist and have had a heart Eco, along with close to 10 EKG's at nearly each doctors visit. I have mentioned endometriosis to my family doctor and gynecologist but both have seemed to brush it off, even with all of the symptoms, and the fact that my mom has it. I've read so many stories about people having problems getting the diagnosis and suffering for so long. I can't immagine that after the amount of problems I have experienced in this short time
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