I am struggling at the moment to see the light through the tunnel. I am going in for my second laparoscopy in six months and I am on the oral contraceptive pill and the mirena coil. I have also been put on a 6 month zoladex stomach injection implant which is making me very ill with the side effects but I have nearly finished that now. When I see my gynecologist he doesn't know what else to give me! I am on large amounts of analgesics and I'm really struggling with the pain in day to day life. I would really appreciate any help.
Does anyone have any suggestions on good ... - Endometriosis UK
I have tried a busload of Birth control. Nothing with estrogen works for me. I am currently a week in on the Depo shot. Have you tried that?
Aardvarklips: Thank you so much for replying, I feel very lost at the moment and it means a lot to get some support. I am on a lot of birth control and my gynaecologist is going to insert the mirena coil in about a week while I have joint surgery for another laparoscopy and gallbladder removal.
Again, thank you very much for your response and I wish you the best of luck!
Have u tried tens machine they help whilst on and also those heat pads u stick to ur clothes - don't pay for expensive versions tho I find the ones out of places like b&q and morissons are the best. Otherwise I don't know what to suggest sorry because I am on a lot myself right upto slow release morphine and have had 4 laps in 2 yrs. I tried prostap and zoladex and they both made me I'll and I still bled constantly so have been for 6-8 wk check after last lap on Tuesday t find out that it really bad n my only option left is hysterectomy so tht has been booked and I am waiting for date. Hope u get sorted soon n that something works for before it gets too bad .
spammie85: Thank you so much for the response! I have a tens machine already and it does help with the menstrual pain very well however when I am experiencing the endo cramps it can sometimes make it too intense for my body. Bless you it doesn't sounds like you are in a very good situation either and I completely understand what you mean from being on oramorph and tramadol along with gabapentin and amitryptiline I feel like a zombie! I hope the hysterectomy doesn't ruin any long term goals for you too much as being quite young myself and after every laparascopy it's fine for about a week with it then getting even worse than before I also find myself wondering whether this may have to one day become the route for me. Thank you so much for the support and I'm upset for you that it has come to this situation. Good luck with the op and if you every feel alone, feel free to message me!
I know this might sound a bit wishy washy - have you ever tried the Endo diet? It's a bit extreme, you have to basically cut out a lot of food groups and alcohol. I have been doing a lot of research on it and am trying it myself. A lot of women swear by it helping them, even clearing them from Endo completely.
It could be worth a try? I'm
Trying it out slowly but surely because it is such a big lifestyle change but I think it's worth trying.
PinkCherry: Thank you so much for the response! That's an amazing idea, I have bought a diet book but until now I have tried to push it to the side but now the pain is getting so unbearable it needs to be an option. Are there any specific foods you would recommend? I don't drink alcohol anyway because of being on a high amount of analgesics but I definitely need to change my diet! It sounds like a brilliant way to tackle it and I really hope it helps you out and that you feel better soon!
Thanks again for the support
Don't hate me for also sounding hippy but have you tried going to a GOOD naturopath or holistic doctor? When i say good i mean one with a good reputation for dealing with women's health. They work on trying to treat the cause rather than just the symptoms. They will work on giving your liver a good cleanse to detoxify your system and flush out excess estrogens. Also natural anti inflammatory herbs and tonic herbs for the reproductive system and to help heal the lesions and help with the pain and bleeding. All in all it's being KIND to your system whilst treating the Endo. I find that i am way worse off the treatment than on it. x
Cooka: Again thank you so much for your advice! I haven't really looked in to the naturopath doctors yet, would you be able to suggest anyone in specific? It sounds like a brilliant idea to me and I would love to try anything that is possible! Perfect because recently when I had a urine test more billirubin than normal was tested in my liver which is not a great outcome. All of your feedback sounds like a really good idea and do you have any herbs and tonic herbs to suggest by any chance? I eat a lot of fruit and vegetables and I try to treat my body as well as possible but I would appreciate any help anyone could offer. I'm really pleased that things are looking up for you, Endometriosis is a nasty disease and I feel so much more relaxed from hearing everyone's support! Feel free to message me anytime
I have been seeing a naturopath for the last 6 months. It's a massive lifestyle change but has defo helped with my pain and makes me feel like I'm doing something positive to try and fix this myself!
It's a very difficult road we're all on and there are times when it seems impossible to see even a pinprick of light at the end of the tunnel. I do feel for you and I know that place well. Zoladex is really nasty.
I echo many of the answers above that point in the direction of diet and approaches that are alternative to western medicine. It's a case of finding what might work for you and because there seem to be so few common denominators with endo, it's not yet possible to say what 'works' with absolute conviction. Plus there's always that old chestnut...everybody's different! Many of these alternative approaches can help support your body in coping with what's happening to you physically and mentally while also preparing your body for surgery.
I naively thought that after a few laps to treat my endo a few years ago that that was it and my doctor said I had a 90% chance of it not returning...I am the 10% and it has returned albeit in different locations. I am kicking myself that I didn't put more effort into taking better care of myself post op and pay more attention to what I was eating. My recent really bad symptoms and the thought of more surgery and drugs was a slap in the face and scared me so much that I have changed to the endo diet plus I get acupuncture and take chinese medicine under a qualified chinese medicine practitioner. I find her very helpful to talk to because she considers every aspect of my life and has an excellent grasp of endo. After 2 months I am starting to see some small signs of improvement but I'm prepared to be patient. The diet, I believe has improved my overall well being and I actually enjoy discovering new things to cook. I especially enjoy juicing and think it can be helpful if your body is under stress from illness.
There are other avenues to try like the ones the other posters mention above. It might seem daunting but try small steps at first. Maybe find a couple of recipes on the endo diet that appeal to you and practice them a couple of times. Sometimes if you make big changes too quickly you might feel worse for a while as your body adjusts. This could turn you off trying.
Both these websites are treasure troves of information
endo-resolved.com info on endo diet here
cureendometriosis.com a real blast of positive energy
You have a busy time ahead exploring all these things...if you choose to. Believe it or not I find it fun! Trying some of these suggestions could help support you in preparation for your next lap and aid your recovery.
Good luck x
Brownlow: I really appreciate you taking time out to reply to me, help and support is brilliant for me at the moment! I'm so glad you can relate with me because although I do have some support , nobody apart from women with endometriosis can really understand you. Sad to hear that Zoladex has affected you really badly too :(.
That all sounds brilliant, do you have anything to suggest in specific? I'm just starting to try out alternative therapies and am feeling quite lost with the concept of it and where to start! If you had any suggestions at all I would really enjoy to hear them!
I really feel for you and your situation, it cannot be easy to be in that situation at all. I completely understand where your coming from as my gynaecologist told me that after my laparoscopy I would get better whilst in fact I took a turn for the worse and was disabled for about a week. I've got a joint surgery in around 7 days and I am really concerned that I may not be able to get back up afterwards. Is there anything you would suggest to help my body with the nasty process that is coming up? I'm having another laparoscopy and gall bladder removal and having the mirena coil inserted. Your chinese medical practicioner sounds amazing, I would really love to try something like that! Do you have anyone specific in mind?
The juicing concept sounds amazing, are there any recipes you could suggest for me as again I'm quite new to these alternative methods and would love any feedback you could give me. Thank you so much for sending me these websites, this could really help me turn my life around! I really appreciate you taking the time out to help me. I really hope that your situation carries on being better and if you every need someone to talk to, feel free to message me! I could do with an endo friend as I find myself feeling quite alone.
Again, thank you so much for your feedback and I hope you can win over this awful condition! x
Just read your question/post... my first piece of advice is this... DON'T GIVE UP!
I have Endo, too. I've had symptoms for a number of years, and I'm due to have my fourth lap, in March. I can totally empathise with what you say - it's NOT easy to see any light at the end of the tunnel with Endo... just years of endless surgeries, and other treatments. I've tried the Pill, and the Mirena in the past; both with limited success (and with a number of unwanted side-effects). I have deep infiltrating rectovaginal Endo (Utero Sacral Ligaments, POD, bowel, etc.) and my Consultant seems to be suggesting that surgery is becoming increasingly risky for me. Like you, I am at a loss as to how to proceed, especially as I really don't want to try Hormone Treatment following the dreadful experiences I had with the Pill and Mirena (acne, water retention, bloating, cramping and intermittent spotting/flooding).
The only thing I can think to do to try to offer you some help is to send to you my "list"... it's a list of things that I try to do to keep my Endo at bay (as best I can). Please remember that this IS only my advice, and my perspective - I cannot say whether anything on the list will work for you - don't feel obliged to act on anything if you don't think it's right for you...
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 (email@example.com), or keep regularly in touch, feel free.
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.html
4. About Chronic pain management Services - nhs.uk/Livewell/Pain/Pages/...
5. How to find an Endometriosis Specialist - bsge.org.uk/ec-BSGE-accredi...
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!!
Scooteeder: I am so happy that you have taken your time out to offer me all of your advice and feedback, this will definitely help me on my way to combating this awful disease! Thank you so much for your information, it means a lot.
I'm really upset that you are in this horrible situation also but I'm really glad that you can relate with me. It seems we have the same problems because the hormone therapies affect me horrendously, especially this nightmare Zoladex injection implant! You sound like you are as lost as I am and I really hope that you find your way through soon. It sounds really nasty and the doctors run out of things to offer you it makes you feel like all hope is lost. I recently went to see my gynaecologist and I asked him what else he could offer me and it was just more suregery, surgery and surgery. I know they don't have any alternatives but I don't think that they actually take time to think about how this is affecting our bodies! I wish I had more advice for you but you need to make sure you stay strong okay, we cannot let this thing take us over! I know it's an awful place to be in but try not to let this take over, you can fight this head on!
Thank you so much for offering your advice to me, I do feel like I need a new direction and I really do feel like your advice could give me this so again thank you so so much. For your advice in number one section this is a very troubling condition for me to be in. My GP used to be brilliant and he is the one who sent me to the gynaecologist I have now however he retired and since then I have been thrown to pillar to post and I am really struggling to find the right GP for me. It seems whoever I go to doesn't even try to fight for me and also doesn't even know what endometriosis is! For example I had a really severe kidney infection and she told me I has anxiety issues and that there was nothing wrong with my body and two days later I was rushed in to hospital! I must have seen every doctor out there in my GP but none of them understand what I'm going through and a lot of them suggest I ask my gynaecologist but my answer to that is I cannot see my gynae every week and I do have so many questions to ask and I feel like this is really isolating me by not having the right guidance from my doctor.
Thanks very much for your advice about a gynae but thankfully I am seeing someone who used to work as an endometriosis specialist and he s the only one who fights for me as his daughter is sadly going through the same phase. I do really feel like if I didn't have him I would have given up a hell of a long time ago! I do again have a real problem with my GP because as you say anyone I go to see is awfully arrogant and dismissive about my disease which if you are a girl with Endometriosis, you do take this as a personal threat because this disease does take you over! I strongly believe that doctors should be more educated on the disease itself because I have failed to yet find anyone who could tell me exactly what it is and I do think that is quite shocking!
Your advice about a diary is an amazing idea! I am going to get one as soon as possible and start recording all this on a day to day base. I'm prone to other illnesses also such as infections so as you say this will definitely help me to pick it up before I get very ill. Thank you for that feedback, it will no doubt help me to look back and to pinpoint any patterns that may be occurring!
I understand completely what you mean by number 6. I make sure that when I feel up to it I will walk at least 15 minutes per day which may not seem like much but I am in a horrendous position at the moment and everyone is different however that is all personally that I am up to do at the moment. I also think that having me time is very important, I have only recently signed up to this website but it looks like it could be the best thing I could have done! I am really finding it interesting to hear other peoples accounts of the disease and more importantly, people's methods of helping to treat the disease.
I do find myself feeling very guilty when I have to take time off work which in 2013 has been the most time I've ever had to take off in my life. Because there is only me and the other Administrator, with a massive workload I feel like I am letting both her and my manager down because me being off for one week could theoretically bring up a month of backlog. I also cannot report anything to a union because I work in a training center which is government funded and we have not been allocated with a union unfortunately. I also believe that in the job that I am at the moment there is not a nice atmosphere due to someone new arriving and causing aggravation which is in turn making my pain worse due to my anxiety.
The pain medication is also a very big problem for me because I have seen the pain team and I have been put on very high doses of Oramorph, Tramadol, Gabapentin and Amitryptiline. I am also having trouble because I also suffer with Irritable Bowel Syndrome so because of the large amounts of analgesics I have been put on, I have to daily take senna and movicol to help keep my body on the right track. The last time I saw the pain team I was told that they had put me on everything they could and that there was nothing else they could offer me. I was quite disheartened by this because I am aware of how much impact these drugs are having on the rest of my body at the same time.
Thank you very much for the feedback including foods and drinks to try out which I most definitely will be doing very soon! You haven't bored me in the slightest and I am really touched that you have taken your time out to reply to me, it has made me feel a lot less alone so thank you very much again for that. I would love to stay in touch and if you ever need to talk, please e-mail me on firstname.lastname@example.org. Your feedback means a lot and could really help me to fight this so thank you so so much again!
Good luck xx
I just wanted to say I'm in exactly the same situation as you and am quite struggling too with it all. No have my first diagnostic lap end of nov13 and since then I've been in constant pain and a lot of bleeding as doctor wanted to try me on cerelle progesterone only pill. I've been back several times but she seems adamant I stay on it (kind of feel like she is fobbing me off) my surgeon wanted me to have the coil too but I really don't think it's for me but will save as a last option. Is your surgery being carried out by a gynaecologist or a endo specialised surgeon. I only ask this as I've just learnt from this site that there are specialist hospitals specifically for endometriosis. Wish I had know this before I had my op saying that your being given lots of different treatments to try and as hard as it sounds it is true trying to find the right balance and one that suits you as this is the stage in at now trying to find something this works for me. So so hard I really sympathise with you as I feel the same :/( I'm new to all this but have found it a great help speaking to others in the same situation. Wishing you of luck I hope things start to improve for you soon. I have another app weds so pray my doctor listens this time and doesn't fob me off x
Just read your reply. Gosh, thanks... I'm stuck for words (which is rare for me!).
All I know is I'm glad to have found this Forum. I'm delighted to be able to share experiences, stories and advice with other women in similar situations. I'm even more delighted to be able to try to help. I really don't think people always get, or understand this side of me... certainly not the people who are around me everyday (except, perhaps for my husband). I get a sort of "warm glow" inside from helping other people to feel good. I can't say why that is. Some of it is maybe my upbringing (I have a parent with disability/mental health problems). Some of it is maybe my personality.
Since being diagnosed with Endo, I've felt at times that I am "no longer the old me"... I've had to stop doing things I enjoy (hobbies that I can't do now due to pain, or lack of energy), I'm more tired and unfit than I used to be, I take loads of medication, I have to work harder to keep my weight stable, my surgery scars can be sore, and I find them unattractive, I cannot have children and this makes me feel "unfeminine"... things I used to take for granted are now so much more complicated. So, I sometimes really MISS the person I used to be. I reckon this is probably a familiar feeling for many women living with Endo.
So, to come on this Forum, and to answer people's questions... maybe to give a little assistance... or just to make somebody smile... THAT'S JUST MAGIC TO ME! I was badly bullied at work because of my symptoms, and it really knocked my self-esteem and confidence. Fortunately, I'm a stubborn little devil, so I decided to go and do something I'd enjoy, instead... and returned to Postgraduate Study! THAT'S a confidence booster!
And so is this Forum... because women like me... women like all of us here can use our own experiences to help other people. Yes, our own experiences may have been negative - BUT THEY DON'T HAVE TO STAY THAT WAY. Once we take the step to use our experience to help other people, the negativity has completely gone - because WE take charge, and WE send it away. When we use our own experiences to help other people, we learn to OWN those experiences, we face up to them... and they cannot really hurt us any more.
I'm just happy to help. I'm happy to try to answer anyone's questions. I'm happy to chat. In everyday life, you cannot meet another women, and say "Hey, do you have Endo?" and then talk about is really easily. Here, it's VERY easy to talk.
So, really (and this applies to anyone who's responded to me)... I'm just as grateful for YOUR time, and for YOUR willingness to listen, as you are for mine.
Thanks very much,