I had my diagnostic laparoscopy 2 weeks ago- after waiting since may 2013 when originally going in for the diagnostic lap after waiting for so long, unfortunately I suffered an anaesthetic allergy as they put me to sleep and the operation got postponed, causing me a further 8 months of pain and added to my 4/5 years of unknowing what was actually wrong inside of me...
went through all of the painful allergy testing and received no positive outcome on the possible drug which caused my anaphalaxis shock during anaesthesia- unlucky and heartbreaking.
& now a big red flag on my hospital records and a pretty medical alert bracelet for me to wear daily!
my surgeon still wanted to go ahead with my diagnostic laparoscopy as he believed me in my pain and suffering and with 3 anaesthetists on stand by and a medical team of 9, they put me to sleep to have an investigation!
I woke up to be told - they had indeed found endometriosis and a lot of it inside, all around my womb, top of my cervix and deep in my vagina and pelvic region- also that my right side of the bowel is severely distended indicating the possibility of IBS too- they did dithermy on my insides to help relieve my pain
endometriosis was suspected before my operation and to be honest one of the outcomes I really hoped not to be found inside of me after reading the horror stories and suffering of many women of the symptoms like I myself suffered from- I hoped for it to be less serious something like adhesions from my appendix surgery in 2012 which was also mentioned but at least It is now confirmed and as everybody around me including certain family members and employers which scrutinize me for time off ill, and the pain I can be in thought 'it was in my head the pain'- & it wasn't, I do truly have a condition which wasn't just 'in my head'
Iv extremely suffered since being around the age of 14/15 and been told numerous times it was my diet and my overall health (when I am pretty normal sized and BMI okay ect) and been told its just IBS and also being on the drug Amitriptyline low dose for my pain when diagnosed with IBS- allthough the pain described by myself which i told doctors including severe cramps when menstruating, clots, abdominal cramps daily, food intolerances, pelvic pain, fatigue all day long, lower back pain, and feeling sick alot and painful sex with bleeding afterwards- the amitriptyline was prescribed because my gp could not be bothered! it does not help in anyway shape or form so I am coming off of that hopefully.
I don't have much of a clue about this condition and I am reading up on it and I have a follow up appointment soon with my surgeon but I'm gutted to be a lady with this condition and hoping I can improve in the future.
big kisses to all those ladies suffering.
x
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lisat21
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Just joined online community this morning as feeling very alone, so sorry to hear everything you are going though, I understand how you feel as in very similar situation and the only person I used to be able to talk to was my beautiful mum who I think also had I diagnosed endo all her life but she has just lost her battle and ovarian cancer and my world is falling apart as my best friend. No one understands unless going through it and reading your story and others this morning make me realise how little support and advice from medical profession there is, I am still waiting for proper follow up and explanation from doctors and been years of pestering and not being taken seriously, you are not alone in your feelings, there must be something we can all do as not fair we have to suffer emotionally and physically because of this, it is such a lonely and isolating condition and painful too, at least we are being brave and sharing with others if nothing else xx
Hello...I have suffered and am still suffering from severe endo.like you I lost both my mum and grandmother to ovarian cancer.I was diagnosed 5 years OK and have been through the mill with trying every possible remedy.I also had numerous fibroides and cysts.I had a total hysterectomy on may of last year...but the endo still remains..Im lucky I have had great support from my gp and friends in the medical profession..and because I kept on and on..pain was unreal. However..I still feel I'm going it alone. The ongoing pain I have no choice but to live with as I'm not strong enough for yet another op. You are so right..it does help to talk about it with other people. I feel as a woman we have so much to endure but by sharing it really does help. However it is now affecting my work and this lends even more to my stress. Wishing you well.
Thank goodness for your persistent surgeon! Also just diagnosed, I asked my GP at follow up what he thought they would have found in the laparoscopy he said "nothing" says it all really! I have it all over my bladder, cervix and predominately right pelvis. I think composure and pure defeat has been my enemy when seeing medical experts, despite breaking down so many times, I really think that they think it can't be that bad I'm just another dramatic woman! Not being sexist but really think we need more female gynae/urologists I have never seen one! I have the information pack sent from endo uk I phoned the help line, it's really answered a lot of questions for me you should get one too. Good luck. Of
I can really empathise with what you say, you poor thing. I guess it's just like that - some of us with Endo really "go through the mill". I'm so sorry that's what they found during your lap.
Do not ever feel you are alone. Remember that there are many women here who can understand and know some of what you are going through - and are happy to talk whenever you need a little assistance.
Like you, I have Endo, and it took ages to get a diagnosis (from 2002 - 2011). I can TOTALLY identify with the lack of sympathy and understanding that you received from your G.P. I suspect that the problem is G.P.s just know so LITTLE in reality. Endo can have symptoms very similar to so many other illnesses that I reckon the average G.P. just gets utterly confused. I just wish they would ADMIT IT, instead of thinking they are Gods! I endured YEARS being told it was IBS, it was dietary, it was "in my head", it was "stress", it was "anxiety", it was "normal period pains" and I was just "not a good coper"! The worrying part is that after a while, you actually start to BELIEVE this stuff!
I've had 4 laps for my Endo, as well as trying the Pill and the Mirena. I guess it's different for each and every woman, as Endo affects all of us slightly differently. Maybe that's why it's such a confusing disease? Some women can have Endo and no symptoms, whilst others have all sorts of different kinds of symptoms, depending upon where the Endo grows. I think it's high time that the medical professions got clued up about Endo, because in the meantime it is causing so much misery for so many women.
I can identify with the anaesthetic problems, too. The last 2 laps I've had some sort of nasty reaction that left me very unwell (and the poor Nurses on the ward VERY busy!). It's like I don't come round from the anaesthetic properly and my whole body goes into "shock" - no movement, no appetite, not able to go to the loo, feeling faint, vomiting, shivering... my pulse goes really fast and I'm all clammy! NOT a pretty sight! I was described, this time, as looking like something from "Dawn of the Dead"! The Nurses kept asking if I was normally that pale!
So, believe me, you are not alone... and need not ever feel silly, or like a "fusspot" for worrying about your symptoms and diagnosis. Having Endo is not pleasant, and of course it can come as a shock to women. After all, we just want to feel well and to get on with our lives - when we feel ill, we just want to know the cause, and what can be done to get us feeling better again.
I'm going to send another reply with some "tips" in it for helping cope with Endo. They may be of use, or they may not. It's up to you to decide what works for you. Just try not to feel too scared, or overwhelmed.
Here's the other reply I promised. Take from it what you want, if anything looks helpful. You are not obliged to act on any suggestion I make, as it IS just my opinion...
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.
Hi Scooteeder (and all you other ladies in the same position. I have just read over this and I just wanted to thank you for this very informative reply. Everything you have said about seeing different doctors, repeating over and over again your symptoms and story and feelings of getting nowhere with your Gynaecologist is the exact same for me. I was told I had mild endo just over a year ago after a lap. I had previously had a suspected eptopic pregnancy the year before (could have been a miscarriage, no one knows for sure) during which I had so much pain on my right side it made me physically sick. Since then, I had the same pain in my right side, can best describe it as a simmered down version of severe pain I experienced during the miscarriage, and this went on for another year until I finally got lap. Results from this showed scarring on right tube and mild endo on left side. I repeat this story every single time I go to my doctors (see different docs every time) and also when I go to gyno and to be honest it puts me off going as I hate to have to go over and over what was such a painful and difficult time. Been on the contraceptive pill, Cilest, for over a year now. Helped pain to begin with but just felt last few months it wasn't making much difference so I've recently gone back to gyno. I've now been told that I should take the pill continuously for 3 months without a break as this could help with symptoms. Apparently longer you take it better it is in preventing more endo? First I've heard! Feel I should have been told this a year ago. I'm 37 this year, now single, no kids and not in the position to have a baby at the moment but worry about how all this is affecting my fertilily. Feel in limbo, catch 22. Been also given new info about Decapeptyl SR injections. Not sure what is the best thing to do. Nice to know whoever is reading this understands how I feel.
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