I'm new to this, i'd like to talk to anyo... - Endometriosis UK
I'm new to this, i'd like to talk to anyone who has endometriosis? No-one seems to understand me?
I've lived with endo for 15 years. I'm more than happy to answer any questions or give advice x
I don't really know what to ask/say to be honest. So maybe i can give you my short story and we can go from there?
Hi, I was diagnosed 8 years ago and was not given any advice or information about endometriosis. I can't believe I have being living with this and didn't even know that they are support groups out there.
I've only been diagnosed within the past month but have been suffering with it for years. I haven't been given any information or advice either. I haven't even really been told what it is properly :/
I didn't either, I think some doctors just don't care esp the male ones as they just don't have a clue about periods,they think you can just pop a pill and get on with it. how did you get diagnosed? if you don't mind me asking
i'll try keep it short! i was seeing a gastroenterologist for stomach pain, they then gave me a ct scan which showed an ovarian teratoma. So then we assumed thats what the issue was, then i started to get really ill and was in stupid amounts of pain so i ended up going to a&e (on valentines day of all days!) and they thought the tumour may be twisting and going gangrene. So they said i had to have an emergency op the next day where theyd cut out the tumour/ovary. I woke up and the surgeon told me they didnt do anything, they had found the endo under my ovary and my ovary is also apparently massive. And since then theyve just put me on a cocktail of meds and im due to see the specialist again on 21st.
Having it is horrible. I was just diagnosed 2 months ago. I have been in pain for at least 7 years. I have had 2 laps, SEVERAL internal scopes and exams, and too many dr.'s to keep count of. I have had years of some pain, and years of severe EVERYDAY pain. I have been through at least 7 different types of birth controls, and now trying the depo shot (as my insurance took too long to approve the Lupron shot). You are best off trying to do online research to better understand. You are best off trying a birth control right after they remove the endo; as this can help keep it at bay.
It's awful that people don't believe us girls my friends all stoped talking to me my family didn't belive me. My parents belive me now and a few friends but most of my family don't. I just got awful abuse from my cousin because apparently I'm just an attention seeker I tried to make her understand but she said I was maki not all up because she googled it so apparently I'm Lying about my pain an the fact I might not ever have kids. It's hart breaking. Xx
I know exactly how you feel. For years my parents have been quite frankly arseholes to me calling me a hypochondriac. Despite having an operation and seeing pictures and being told by the surgeon himself they still give me a hard time saying im over reacting. They'll never understand unless they get it themselves. But luckily i have an amazing boyfriend and he has been there every step of the way. But i do feel very scared now, what if i cant give him children?
That's what scares me. My ex left me when he moved to Uni. My cousin was saying to me the other day that I'm pathetic and if I don't stop complaining I'll never get another boyfriend and if hav to hid the truth from them. I said what's the point in getting in a relationship when I dot know if I can have kids what if I can't. I've always wanted them even tho I'm 20 I think that's te worst part x
I'm only 22 so not much older, i dont want children at this stage in life but in the future i definitely want a family with this guy. Theres a bit of an age difference as he's 28 so he may want kids sooner than i do. I know hes understanding but it'll hurt me more knowing that i probably cant do so x
Hi there,
I am bursting with knowledge so if there are any questions or anything you'd like to get clued up on then let me know and I can help. I know pretty much everything there is to know about Endo and have suffered for 7 years now. Its awful that you have it but the more knowledge the better. Everyone on here will give you advice and support so talk to as many of us as you can to get a full prospective of it.
pm me if you'd like to know anything or have any personal questions, I've seen and heard it all.
Leya x
Bless you guys. Get use to them looking up there I had my consultant, 2 medical students and a nurse up there yesterday all having a good look. Hey ho it's nothing compared to childbirth. With Endo the pain & period are tough the best advice I can give it read online. We didn't use the internet when I was diagnosed I remember my mum looking but I wasn't really old enough to understand. As soon as you have your lap and it is lazered away get on the pill or coil. I try-cycle my pill so I only have four periods a year. In 15 years I've had 6 laps. You need to go back to the doctor as soon as possible when the pain & bleeding gets bad again. I fought it once for a year during my divorce and i ended up a right mess in bed drugged up for months. Children wise if you want one the best advice again is try right after a lap. I had a 2% chance of having him but we did 5 days after a lap I feel pregnant. I really wasn't in the mood but I wanted a baby. So I'm now 15 years on I now have endo, poso, adeno and fibroids. I got told yesterday I need a hysterectomy. The endo u can fight lazer it, injections and birth control. It's the adeno that's done it for me my womb is tired and had enough my consultant doesn't even think I can make a pregnancy anymore. You can live with endo and it's not all pain and bleeding once you work out what birth control is for you I went months and years sometimes ok. Everyone on here is great and really supportive as people don't understand. X
Hi Icklieone,
For some good information on endo have a look at this site sydneygec.com.au/your_healt... Another member posted this and many of us thought it was quite good.
I'm not completely clear on what type of specialist operated on you and discovered your endo. In some ways it does not matter who the specialist was but it now matters what specialist you see next. The good thing is that you have a confirmed diagnosis.
This next bit is important. You need to get referred to and endo specialist. If you are with a general gynae that is not sufficient in my opinion. Endo specialists are attached to endo centres around the country and they are approved to treat endo. It is a very complex disease and general gynaes are not sufficiently knowledgeable or surgically experienced in treating endo. It sounds to me as though endo is beyond the skills of your surgeon but I don't have all the details and he/she might have good reasons for giving you certain meds.
You have 2 options:
1. GP
I suggest you see your GP and ask for referral to an endo specialist. On the nhs you are allowed to choose your specialist so tell your GP which one you want to be referred to. Choose one here bsge.org.uk/ec-BSGE-accredi... If you can't find one near you try an aspiring endo centre here bsge.org.uk/ec-BSGE-provisi... Bear in mind that aspiring centres don't always get approved.
GPs are often not aware of endo or the fact that there are accredited endo specialists so you might meet with resistance. If you do you need to get pushy!
2. Specialist
Or you could go ahead with the appointment on 21st, and request referral to an endo specialist if the surgeon is not an endo specialist already. The only way to tell if he/she is an endo specialist is by checking the list of centres. Some gynaes say they specialise in endo but they are not approved.
You could also research the endo diet. Many of us find it helps with certain aspects of endo and at the very least, improves our overall health. Here are some resources:
endo-resolved.com/diet.html the whole site has tons of useful info
josephine-eliza.blogspot.co.uk lots of recipes
cureendometriosis.com an interesting and positive site
Pinterest is also a good source for recipes.
Good luck and do your best to learn as much as you can. It is quite overwhelming and daunting at first. x
hello
I was diagnosed with endo around a year ago and have been doing lots of reading online.
Medical sites (quite basic):
You've probably seen NHS pages, though they aren't massively comprehensive:
nhs.uk/Conditions/Endometri...
Bupa also has some info:
bupa.co.uk/individuals/heal...
This one was recommended by a hospital consultant I saw:
rcog.org.uk/files/rcog-corp...
Charity sites (better!):
There are some good charity sites too. The two main UK ones are Endometriosis UK and She Trust:
She trust has produced the best leaflet on endo I have seen anywhere. It's quite in-depth but really takes time to explain everything:
shetrust.org.uk/wp-content/...
Personal accounts:
This is a great little website with loads of great info on it written originally by a woman who lives with endometriosis. It's much more personal and written in an accessible and engaging way:
endohope.org/help-with-endo...
There's a good article in the Guardian here too from author Hilary Mantel who has had endo all her life:
guardian.co.uk/society/2004...
I found these sites also helped explain endometriosis to other people too. A lot of articles etc seem to characterise it simply as a condition which gives you painful periods and that's so unhelpful as it can be utterly debilitating.
Anyway, I hope that's helpful for you to get you going.
Laura x
Thank you everyone, I have a day off work today so I shall read everything you guys have shown me 
For my hospital appointment on the 21st i'd like to have some questions ready to ask but i dont really know what to ask? Does anyone have any ideas?
I was diagnosed with endometriosis in November after my first and only lap..my own doctor sent me to a female gynecologist and she told me right off that what I was describing sounded like endometriosis. The lap confirmed her suspicions..she also found many fibroid tumors. She gave options including the depo shot..hysterectomy being the last resort and also a drug called Visanne which is a dienogest which acts like the female hormone progestin. I started taking Visanne in December and it stopped my periods within a month and also stopped my endo pain almost completely within the same time frame. I was in pain every month for at least half of the time..excrutiating at times and my emotional state was growing to become extreme as well prior to taking the meds. Visanne has seemed to solve all my problems with very little side effects to have to endure. I would recommend it ..has only been available here in Canada for 2 years.
I'm with you, I've only just found this forum so any advice would be great.
I'm 39 now and after suffering lower abdo pains for 18 months I was referred to gynae at my local hospital. I had internal ultrasounds, etc. but nothing showed up. I had another appointment explaining that it was painful when I went to the loo so they said it sounded like a bowel problem so I was referred to the bowel department. After numerous painful endoscopies and a CT scan they noticed an unusual lump on the wall of my sigmoid colon. In 2012 I had a sigmoid colectomy to remove the lump. I was told that during my op they called gynae in as they found signs of Endo. And the results of my colectomy confirmed that the lump which was removed was also Endo. After my recovery when I came off the post-op painkillers my lower abdo pains returned. It obviously wasn't the lump that was causing the pain. I had a mirena coil fitted in 2011 but this never seemed to stop my periods. So to numb the pain I am now taking a desogestrel pill which seems to be stopping my cycle and therefore the pain. I have been given no advice about endo or what can be done to remove it. They just seem to be 'numbing the pain' as a cure!
I know that feeling, i'm having a bit of a bad day with it today and im absolutely terrified about how bad i will end up tomorrow as my job requires hours of standing and running around. I've been taking mefenamic acid for mine and it was working fairly decently, i've now ran out as the supplier for my chemist has run out of it completely. I've been given naproxen but its had no effect as of yet.
In recent weeks my pains have returned. Last time I was given my repeat prescription the pharmacy gave me a substitute pill. I normally use Cerazette but this time they gave me Feanolla. I called the doc this morning and advised her that it seemed too much of a coincidence that after one packet of Feonolla my pains had returned and I had a very mild period, the first one in 18 months! She has now prescribed me some more Cerazette so hopefully the pains will settle again. But at the moment, I too am taking mefenamic acid to help with the pain, they seem to do the trick for me too. But before long I think I may go back to the doc to see what can be done, I've had no follow ups since my diagnosis, just pills to stop my cycle, nothing about how to combat the endo. I'm pretty clueless to be honest!
I have a meeting my gynae specialist on the 21st. I wanna have some questions ready for the meeting so i know what my best options are as quite a few people on here have said my best bet is to get myself a specialist in endo. I think this is what i will definitely do especially if they cant reassure me they're doing everything they can. I cant keep living like this, its horrific it truly is.
Sounds good to me. Unfortunately for me, when I was having all my tests before my op I had no idea that I had endo, otherwise I would have questioned it all then. Good luck on 21st, let us know how you get on x
Hi "Icklieone",
I'm sorry to hear that you are apprehensive about everything - coming to terms with a new, and unfamiliar, diagnosis is not easy. Fortunately, you seem to have a wise head on your shoulders (as do most of the women on this Forum) - you have already started looking for help and resources, and have found this discussion site. Here, you can talk openly and honestly with a whole load of women who also have their own experiences of Endo. You'll get a range of opinions, and a range of situations - from people who have just been diagnosed, to "long-term" Endo sufferers.
I have Endo (finally diagnosed 2011). I had "problem periods" as a teen, but they were never really investigated and I just got given the Pill to "regulate" them. Years later (2002) I started suffering all over again - period problems, pain, upset stomach, diarrhoea, sickness, cramps, bloating, fatigue... Still, I did not get referred to a Gynae until 2006, and because of his incompetence and lack of care/support, I did not finally get an accurate diagnosis until 2011. Such is the way it goes for many of us with Endo!
Endo is perhaps not an easy illness to understand, or diagnose. First of all, it is INVISIBLE (probably the main reason why other people don't seem to believe we have it!). Then there is the fact that the symptoms can be very similar to symptoms from other illnesses, so Doctors can easily get confused and think we have an illness we don't, whilst also missing the fact we DO have Endo! Finally, there is the fact that Endo is experienced differently by each and every women. Some have no symptoms, others have lots of different symptoms depending on where their Endo is and how much there is of it.
I'm going to send you another reply as well as this one, in which I've listed things that you might like to try, in order to help you keep in control of your Endo. DO remember that these are only my suggestions - you are not obliged to act on anything I say. Rather, I would much prefer that you read through the replies on here (including mine) and take from them whatever YOU personally think may be useful. After all, YOU are the one experiencing YOUR symptoms, so it is always sensible to do what suits YOU in terms of treatment.
It's ALWAYS tricky to know what questions to ask at appointments. This can be for a number of reasons (and I'm pretty familiar with them ALL!)... You may feel short of time. Or embarrassed. You may feel nervous, or you may forget things. Sometimes, it can be handy to keep a DIARY of symptoms - what they are and when they occur. This can make it easier for you to remember everything, and easier for you and your Doctor(s) to spot patterns in your illness. It helps you notice patterns in your menstrual cycle, and to spot if there are any links with when your symptoms get worse, or better.
I have also included in this reply a couple of links to information on websites that gives advice about the sort of questions it is always sensible to ask at appointments for your Endo. Don't be put off by the name of the first website - although it is foreign, it still provides a helpful and pretty thorough list of questions that you may like to consider. The links are:
roboticgynsurgeonsofnova.com/questions-to-ask-your-doctor-if-you-have-endometriosis
and
webmd.boots.com/women/tc/en...
These sites offer pretty generalised lists of questions. You might like also to think about your own PERSONAL circumstances, and add any questions that relate specifically to you. Again, it can be helpful to write questions down, and to ask if you can take notes in appointments, or if your Doctor can give you a typed letter or a copy of what you have discussed. Many are happy to do this, and you can keep these letters for future reference.
I hope that by the time of your appointment you are less anxious. Try not to fret too much - remember that there are many women on this Forum who have been through similar experiences to you, and are always happy to listen, and to share information and advice. Don't EVER feel alone!
Good luck. Very best wishes,
Elaine Ellis. x
Hi again...
Here's the other reply I promised. It's pretty long, so feel free to take from it whatever you think is useful, and discard the rest!
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. You could maybe download information about Endo from a charity website and give it to family and friends if they ask any questions, and want you to explain what you have. 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.
3. Endometriosis diet - endo-resolved.com/diet....
4. About Chronic pain management Services - nhs.uk/Livewell/Pain/Pa...
5. How to find an Endometriosis Specialist - bsge.org.uk/ec-BSGE-acc...
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!!
Don't understand why my doctor won't diagnose me with endometriosis
Does anyone else’s Endometriosis like to trigger infections?
Abdominal wall Endometriosis...anyone one else have this?
Has anyone got pregnant with stage 3 endometriosis?
Has anyone had an infection due to endometriosis?
