Hey guys, really happy I have found this group so early on as many of you have seemed to suffer alot in silence!
I had pelvic pain and really bad periods for over a year however the constant pain when going for a wee has been going on for a long time.
The doctors thought i had bladder infections but after being told it was a 3rd one in a month and it wasn't going, neither were the tests coming back as infection positive, the pain was getting so severe, I was starting to sleep for hours in the day!!! Eventually I decided that was enough and managed to get an appointment with a gyno who then after a few weeks did a lap and found pelvic endometriosis!!!
wow sorry that was long, I find it hard to talk to my friends about it as they have no idea what it is, I am at university so I am not much fun for them atm but they have actually been great and held movie nights for me in mind, as it can become quite lonely when they are out partying!
ive had a mirena fitted and due to start the pill too, so any advice on dealing with the pain? Diet? Alternative therapies?
thankyou for reading xxxx
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anneliives
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Hi, I'm glad you've found this group so early, I only found it two weeks ago! Glad you've been given a diagnosis to your pain. At least now you know what was wrong. Awe you must be young, at uni..... What a shame you've got endo & had a lap whilst at uni. Glad your friends have made it possible for you to socialise, by arranging alternative stuff to out partying. Hope things settle down for you following your surgery and hope the Minerva coil works for you. ....there is loads of good advice and you will get it on this site, but I'm still looking into options myself.... My advice so far is get a hot water bottle or heat pad.... and some good pain medication that works for you. Take care Molly
I'm 22 and understand the social affect that endo has. While friends are going out drinking, partying and able to go to work the next day, I just can't be bothered with it. The best advice I can give is explain it to your friends. Once mine knew they were more willing to have nights in where I could be there rather than nights out when I couldn't be.
Heat pads are your best friend! You can wear them and no one knows, I've worn one to work and even a night out just to get me through.
Hey, thanks for replying!! I have just started taking the pill today too as advised by my gyno, quite bad period pain now and heavy bleeding, I'm not to worried as I've heard its normal. I have an appt with my gyno next week which is great. It seems I was really lucky to find a good one who suspected endometriosis straight away.
I will invest in some heat pads!! Hope all you guys are ok today!
I'm a fair bit older than you, but I can really identify with what you say. I'm currently part way through Postgraduate Study, and I also have Endo... I can completely agrees that it does tend to get in the way of things.
No matter how old a woman is, if she has Endo, it can have a huge impact on daily life. Symptoms vary from woman to woman, depending on the extent of Endo, the type of Endo and where it is found. However, each and every symptom can have an unpleasant and debilitating effect. It is common for women to experience things like chronic pain and fatigue; bloating; weight gain; water retention, nausea; upset stomach; cramping... MANY things that can make life difficult. Having symptoms can be a huge nuisance - they cause upset and distress. They also cause immense inconvenience because many women find that they are not able to do things that they used to be able to do easily, or that if they can do things, it takes longer and it's harder to do. This means that some women can end up having problems at work, or studying; and some even give up hobbies and their social life.
Personally, I've had LOTS of surgery (due yet another lap on Monday!) and this tends to get in the way of things. I was badly bullied at work because of my symptoms (VERY unsympathetic employer!). My University have been great - but even then, I had to take a year out from my studies because I felt so ill, and needed so much surgery. I do sometimes worry that things will affect my grades, or that I will get behind on my workload; however my Tutors have been pretty supportive. I think that because I've tried to plan ahead, they understand that I'm doing all I can to keep up with my coursework.
My Endo HAS affected my social life quite a bit. I used to do a lot of Aerobics, and go weight training and hillwalking. I find things like that VERY hard to do (half an hour's Aerobics would probably kill me!). I also miss going horse riding, but I'm worried about it causing increased pain. I find it hard to go out for meals (because I suffer from lots of bowel-related symptoms due to Endo on or near my bowel).
I can understand that when you are young, and just starting University and getting your head around the rest of your life, having Endo can be a serious frustration. It's very good that you have supportive and caring friends - they are well worth having around you. You really do get to know who your friends are when you have a long term illness like Endo. Sadly, you will also find that some people can be incredibly ignorant. The only advice I can give, here, is that you do not need negative, bitchy and un-supportive people in your life.
I'm going to send you another reply, with a list of things in it that I do to try to control my Endo. Please remember that they are only MY suggestions, and that whilst they work for me, they may not suit you. You are not obliged to act on any suggestion I make - it's better to read through and make your own mind up about whether you want to try something, or not. Whatever you choose, I wish you all the best... and I hope that you do well in your studies. Good luck.
Can I ask what symptoms you have as I'm under a Gyno and due a lap In a month but that's for hydrosalpinx as I'm trying to conceive,but I've been going to urology also because I always get pain and they thought it was ibs then they thought I had kidney stones which went on for a while but then they realised it was just scarring of the kidney from other problems as a youngster, so I'm still unaware of why I get all this pain, I get it a lot around my right side and it's quite painfull to the point where I'm in tears in the middle of the night,then it can vanish for while then I get stomach pains like a shooting pain that can last for few hours but then goes ,also my back can be really sore at the time of these pains,my stomach feels swollen a lot,sometimes people comment I look pregnant, also I find when I go for a wee it feels like I have to push it out and that my bladder doesn't feel like it's completely emptied, just wondered if any of these syptoms sound similar I guess I would know after the lap just wondering wether to mention endo
Hello Milly, I had severe pelvic pain on my left side but then went to my right side. Sometimes it would go but when it came back it would stop me in my tracks. If I did a lot of cardio the pain would come on so I stopped and in the end even if I walked too fast I felt like I was 'stuck'. My back would become very sore and I would sleep heaps. Yes my stomach swelled too. If you Are going for a lap for your peace of mind there is no harm in mentioning it to your gyno about the possibility of endo.
Here's the second reply I promised, for what it's worth. Have a look through if you like, to see if there is anything that may help - 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. 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.
Thankyou so much for replying, I have saved all of your suggestions on a word doc for future reference, I feel a lot better about it now, I hope your lap goes well on Monday!!! X
I just hope that I can be of some help. I really do feel that women with Endo deserve as much assistance as can possibly be made available to them. In fact, ALL people living with long-term health problems, diseases and disabilities need and deserve help. Life isn't always easy; and we need a bit of moral support when things go "belly up" through no fault of our own.
Perhaps you (and others reading this) might like to sign my Petition? If you would, you can find it on this Forum (at a post called "Please consider signing my E-Petition). I'm asking for better care and treatment for people with Gynae problems and/or infertility.
In the meantime, I wish you all the best, and every success at University. Work hard and study hard, and I hope you find that you are rewarded for your efforts. Don't ever give up - if you can cope with studying at University AND with having Endo, you're already proving that you've got it in you to achieve pretty much anything you want... THAT goes for EVERYONE on this Forum. If you can cope with whatever you are doing in life AND cope with having Endo, then you're proving you're a pretty strong person who CAN achieve, no matter what.
I'll be glad when Monday is out of the way! Fingers (and everything else I can cross) crossed in the meantime!
I don't know wether to try the dipro Lupron shots or have surgery. Its on my bowel so surgery will be more difficult. Im scared either way honestly. Any advice? Im halfway through menopause already and when they did an oblation on me 3 yrs ago they found a lot of endo. Thought I should wait it out because after menopause it stops growing, Im not in pain but some aching and bloating. Im really unsure what to do.... Im 54 Help????
Symptoms sound alike will mention it before the lap in case there is an suppose they might be ready to maybe deal with it incase there was any,thank you x
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New To Endo. Advice would be Great
