Supporting my Best Friend

[CJADEM]

Hi Ladies .

I am new here to this Forum .

My Best Friend has Endometriosis . The topic is a bit of a heavy one for her sometimes so I am just being the best support I can be without being to pushy . I have been helping her for the past few years to deal with it and slowly approaching ways to help her focus on whats important for her endometreosis not to flare up etc .

I know her concern is her biological clock . Which I understand can be a heavy subject when you have Endometreosis .

I had a few questions .

Are there free Consultation or Clinics in London available for her to go to ? She has had surgery before and has been to doctors etc but not for a long while . And I don't think she had bought up her Endometreosis for a while .

What are the Vitamins and Supplements that she should be taking she currently uses the evening primrose , milk thistle and B12 or B2 cant recall . Are there any others that would assist .

She is Gluten and Dairy intolerant but it is very hard to be strict with this .

When the Endometriosis flares up what have people found to be the most comforting for the stomach? Usually I just place my hand there and it seems soothing for her but I'm no longer close by unfortunately .

I am just wanting her to feel more comfortable about talking about it but I can understand its difficult . I also want to slow down the flare ups as they see to happen more often . And also I obviously don't want my best friend to become too heavy when it comes to her biological clock and having endometriosis .

Thanks C

[GrittyReads]

It's nice that you are writing for your friend, and it's good that she has got you to help her. A lot of women with Endo don't get the support that they deserve from family and other loved or close ones - even other women! Some women seem to think that they have had: 'bad periods' and 'just got on with it' and therefore are not sympathetic. I know I got that from other women, as a teacher. Also men are often so ignorant, and just think it's 'periods' .... 'it's what happens'. Very few people understand the agony that endometriosis can cause, regularly, or that it can be so bad that it can affect other organs in the abdomen, as well as fertility, mobility and general health.

So, it's really good that she's got you.

If a woman's Endo is causing her problems, her GP should refer her to a BSGE Clinic. These specialise in the treatment of Endo, and are much, much better than general gynaecologists at any old local hospital. GP's have a 'duty' to make this referral if symptoms warrant it - and it certainly sounds as if your friend's do - yet often this is not done by GPs if women do not know that they have a right to this.

Contact 'Endo UK'. There is a link to their website at the top of this page, where you will find phone and email details to contact their trained advisors. There is also loads of advice to read on the website. 'Endo UK' can give you - or your friend - all the advice that's needed. There are sure to be BSGE Centres near to you in London, but it is best she goes to one of these. Most general Gynaes can often just keep doing the same sorts of partial removals of endo tissue, but this can just make things worse in the long run, if they don't remove it all. The 'Endo UK' website also has lots of useful advice and info, and you can read around on there. Also, reading a lot on here will help you both to learn more.

I hope this helps.

[CJADEM in reply to GrittyReads]

Hi there ,

Thanks you so much for your response .

Everything you have informed me of is great . I have been doing my own research online and then discovered this which seems full of helpful information.

I do feel sorry for my friend as it looks uncomfortable and can really be a set back sometimes ... with work etc and physical activity .

Periods are different for everyone . And I understand that they can be a lot more painful for those with endometriosis which I am so sorry for .

BSGE Clinic we both have never heard of this . That is excellent ill most definitely look into that for her . Interesting as I believe that she has just been to see GP's and gynos for her precious treatments . Clearly the Surgery want %100 successful but I understand that this is common .

Thank you so much again for your response . It really is appreciated . Pray that you don't have to many future problems with your Endo . Every Little Bit helps .

=)

[Marcia71]

Agree that it is lovely to hear of someone so up for supporting their friend so well done you!

Agree on bsge clinics too - I'm under the one at Guys. Most GPS have never heard of them so go armed with the info on where you want to be referred.

Many people find warm baths or a heat pad help the pain. I didn't really but suspect that's as my endo had caused my bowel to stick to my pelvic wall and that was what was causing so much of the pain for me.

I didn't learn I had endo until I was in my 40's so my biological clock was ticking loudly and then found it had made me infertile and my womb was misshapen so if by some miracle I had fallen pregnant I would most likely have miscarried. So I'm now have some counselling to help me deal with all this information. If you can suggest that to your friend it may help a s having that independent person to talk to has helped me with many issues before now.

If you look up about the endo diet on line you'll find lots of tips. I couldn't cope with it as so restrictive but many women seem to have good results in that it reduces pain and tiredness and can help fertility.

Well done again for caring so much and best of luck to you both.

[CJADEM in reply to Marcia71]

I think everyone needs support . A lot of people lack knowledge about Endometreosis including those whom have been diagnosed with it .

Okay ill be sure to make sure she is Armed on the info about the BSGE Clinics .

Yes the heat Pads are good . Must advise on purchasing some more .

Oh I am so sorry to hear your news on your situation . So sad . Glad you have found someone to talk to . This is so important and Crucial. Unfortunately I am no Professional in this area so I can only do my best as a best friend to listen and just hear her out . but I think someone professional may help also .

Ill be sure to find all the tips on the diet . Thank you . I can imagine it would be really difficult being so restrictive .

Thanks you . And Best of luck to you also !!! Wishing you the best health lady .

[poppy75]

What a brilliant friend. Endo can be a hellish condition and your support will mean everything to her. I have good friends but not one of them has researched Endo like you have. It's invaluable to have a friend, partner or family to fight your corner as it can be a battle with gps and getting the right support, also for someone to accompany you to hospital appointments to take notes and ask the questions when the patient is too stressed and upset to take it all on.

As has been mentioned above, do read through everything on Endo UK and call them for advice. It sounds like your friend really needs to see a BSGE specialist. I also thought it might be good for your friend to meet or be in touch with others in London who have Endo. On Endo Uk you'll find online Facebook support groups. There's one for central London. They're private groups so she or you could join without it showing on Facebook and the only people who can see posts and comments are those in the group. They organise informative talks, picnics, get togethers and as a supportive friend you'd be most welcome. It may help your friend understand Endo more, get the help she needs and be able to chat to those dealing with Endo. I've found it a god send as the group is so friendly and supportive and it's so difficult for those not suffering with it to understand.

As for pain relief there are many options and its trial and error to find something that helps you. For instance, anti-inflammatories like ibuprofen (over the counter), naproxen (by prescription) etc can be helpful if you start taking them 4-5 days before a flare up/period and continue throughout. I also take prescription codeine and tramadol so that's a conversation to have with a GP. As far as GPS go, if you feel they are not taking the illness seriously switch Drs until you find one that does. It is shocking how many gps know very little about Endo. Also go armed with info on BSGE centres, the Endo NHS pathway etc to ensure the gp refers your friend to a BSGE hospital rather than general gynaecologist.

If I had an amazingly supportive friend like you these are the things I'd find really helpful on bad pain days...hot water bottles for pain, for days when pain is moderate and she is able to get into the bath I find Dead Sea salt or Epsom salt very helpful along with a few drops of lavender essential oil. Magnesium can be helpful as a spray on oil, in the bath via the salts above or as a supplement. Evening Primrose Oil or Starflower Oil as a supplement daily. When pain is building I gently massage vitamin e oil with a few drops of lavender essential oil front and back while doing breathing exercises. It helps me to relax and to focus on something rather than the pain. The more tense my muscles are the more severe the pain is. Again, another distraction tip - when she's suffering the most and you can't be there, sending a few links to upbeat Netflix programmes etc for her to watch in bed would be helpful. Anything fun and uplifting that doesn't warrent too much concentration helps me loads when I'm stuck in bed waiting for painkillers to kick in and clutching a hot water bottle. The distraction helps me and if I'm lucky the painkillers will help and I'll be able to nap even before the programme is over. Having quick to prepare snacks in the house at all times and/or freezing batch cooked meals. If the pain is severe I'm lucky if I can stand up in the kitchen for 5 mins so quick to make meals are essential to keep my strength up.

You really are a wonderfully kind friend to be supporting your friend like this. Xx

[JackieBo in reply to poppy75]

EMost of the other ladies have already said anything I could think to say. For me, the only thing that helps on really bad days is a hot water bottle and the fetal position. We have a recliner chair and I've learned to create a sort of sitting fetal position- I stack about 3-4 pillows under my knees so my legs are tucked close to my belly in a comfortable way, pillows on either side of me, a hot water bottle on my belly or back, depending on where the pain is worse at the moment, and a good, comfy blanket over me. It's a little nest of warmth that allows me to sit up and read/watch things comfortably.

That, plus STRONG pain pills. Good luck! Your friend is lucky to have you. You're a rare gem.

[poppy75 in reply to JackieBo]

I'm so investing in a recliner chair after your post! I end up stuck in bed for a week as my (landlord provided) two 2-seater sofas in the lounge exacerbate the pain more. I need to stretch out! By the third or fourth day of pain it would do my mental health good to be able to escape the bed. Thanks so much for posting this xx

[JackieBo in reply to poppy75]

No problem! It really has become my main piece of furniture. My "sitting fetal" pillow position is the only way I can get some rest some days. I've even slept in there a few nights when trying to lay down made my back scream.

Ours is a double so my husband can sit next to me, or our 40 kilo Labrador, which is good for comfort. 😉 We got ours for free when a neighbour was getting rid of it. Check Craigslist maybe for a cheaper one? It's worth its weight in gold!

[poppy75 in reply to JackieBo]

Great tip! I'll certainly have a look at free ads. I end up with about 10 pillows propping my back and side in bed so I'm supported in the fetal position. Hot water bottle front and back. I also could do with a comforting dog the first sign of me being in pain and my cat runs for the hills 😂 It is soothing on the very odd occasions he graces me with his presence and curls up at my feet while I'm wrapped up in my bizarre pillow coccoon

Thanks again! X

[CJADEM in reply to JackieBo]

Hot Water bottle we do have . Must invest in some more heat pads for those days that she has to get up and struggle her way to work .Poor Thing . Fetal Position okay usually her lower back causes her agony so she doesn't do the Fetal but we can attempt in addition to some of the other tips we can do .

Yes I agree you need a little nest in that position that is just comfortable and stay there .

Not %100 supportive of Pain Killers as we look to fight it the natural way . Although yes we do use them majority of the time cut they work .

Thanks you . I believe you ladies whom have to go through this are gems . I cannot imagine what it must be like.

Wish you back to health and hope that Endometriosis loosens its grip on you !

[CJADEM in reply to poppy75]

Yes I have heard that Endometriosis can be horrible . And I honestly feel for all you ladies who suffer from it . I have only witnessed some of the side effects and reading through some of the info I have seen on Endo I cant even imagine what it feels like .

Thank you for your response . It is evident through the responses that having someone to support you through this is really important .

I think with the level of stress with her job and also barely having time to herself that I would want to find her in a more settled mind frame to maybe get her to consider the London Community you mentioned . It is so great that there is one . But I can most definitely encourage the support groups online for sure .

I believe she does know a fair bit about her Endo as everyones condition can be different with symptoms . And I understand that when she is in pain I just want to be there for her to collect the hot water bottle when she is restricted in movement. To go down to the shop if we are out of painkillers etc . But I have made note of everyones suggestion and summarised the tips and things to help . Its all worth a shot.

I think for those who are supporting . you have to understand that this is a heavy condition and when they are peaking through pain this includes their whole wellbeing so nothing they say or do is to be taken personally . Its just part of Endometriosis . You have to look past it and know that they do need you there more than anything even if it doesn't appear or feel like it .

Thaaaaanks you so much for the tips in the last paragraph . She suffers from agonising back pain nearing and during her period in the lower back so ill be sure to tell her to look into these things .Some of these we haven't tried .

I understand that everyone is suggesting PainKiller . We do use these but look for the More natural alternative .

Thanks you so much . And I wish you the best of health and that your Endometriosis does ease for you !!!! xx

[poppy75 in reply to CJADEM]

You're doing a great job at making her feel less alone even if she still sometimes feels like she is.

I obviously don't know how your friend reacts when it all gets too much, maybe you're sometimes on the receiving end of grouchy comments when the pain gets too much for her. I was my mum's carer for 2 years before she died and so was in the firing line at the times she felt angry and scared. You sound very empathetic and all I can say is when I'm looking after someone who is ill I remind myself that however awful it is for me it's a 100 times worse for the person in pain. They are going to snap as no one can stay in a good mood when they're in pain so often. Whatever they say do know they really do appreciate your help. I say this from experience as the patient and the carer at different times.

As for the Facebook group. Whenever you do decide to introduce it to her encourage her to join the group and just browse the posts for a month or longer. She doesn't need to post stuff or comment. I definitely was a silent member on there for quite some time but it was a revelation reading posts by women that could have been me. I'd never met anyone with similar severe symptoms at that point so just reading them made me feel a hell of a lot less isolated. When I did eventually comment or post I was incredibly touched by how helpful, understanding and friendly others were. I still haven't managed any of the meet ups due to pain but I'm now really looking forward to meeting the others. It's a damn isolating and scary condition so understanding and real support from others helps so much mentally.

Good luck with everything. Keep us all posted and do ask if any questions pop up xx

[caroljane80]

Hi well speaking from experience vitamins etc dont really make a great deal of difference. Unfortunatly endometriosis tends to get pushed alot into the realms of complementary medicine and put back on the sufferer to sort it out wit their emotions etc. Really it just needs proper medical treatment which is hard to get as alot of medics out there dont have a clue. People even operate on it without a clue and often make it worse!. Your friend needs proper treatment . Either by excising the endometriosis and or controlling her hormones with various drugs that are out there. If your in the uk there are a few good places but even an endometriosis centre can sometimes be rubbish ( as i have found out to my peril ). I cant recommend but london does seem to be up and coming and appears good at what they do and at least they seem to treat it other organs bowel , bladder etc as it can be a massive misconception that it just needs a hystorectomy ( which is not true ). There are private options again i cant recommend but they are expensive. Sometimes i have gone and got a laparoscopy privately just to prove to the nhs it is there and then get it treated on the nhs. BUt more recently ive just gone private as not getting anywhere with my current endo centre. There are other thing sit can be as well that have similar symptoms such as crones , irritable bowel , cancer even . Adhesions from previous surgeries or sticking together of organs ( adhesions and /or the endo itself ) can also cause pain. There are stronger pain meds out there but personally when im in pain even morphine doesnt help. Im seeing my consultant tomorrow about a possible bowel resection as the pain seems to be there. Ive been chasing endometriosis around for years but it may turn out to be ny bowel and /or something inside it. To stress a colonscopy doenst look all the way inside just does large bowel and an endoscopy doesnt reach all the way down into the small intestine . There are pill cameras for this im told. MRI and ultrasound dont usually show the disease nor does ultrasound. A laparocopy is the best way but it only views the outside of the organs. You can get one of these for about £3000 to £6000 depends on who you use but you need an endometriosis expert. I have had a laparoscopy on nhs twice now and both times when i went for a second opinion privately at cost to myself they found it!!! Id maybe see if she can get treated with gonadatrophin agonists as these will help show if her hormones affect it. It also may bring some short tesrm relief but they only like to give them for 6 months. Ihad two years. The irony is that the hospital were more than willing to do a hystorectomy but this places me ( with ovary removal ) in the same risk catagory for bone osteoporosis from low hormones as the injections so i cant see why they changed from the injections to the hystorectomy ( with ovary removal ) the hormones stay the same if they leave the ovaries in. She will need to take hrt if she has gonadatrophin agonist injections but the hrt can raise hormones and aggravate it. Personally they worked quite well for me. I wasnt tibolone hrt but then they took me off the injetions ( forced my hand really as i cant live without them ) and i had a hystorectomy. Ive been in agony ever since and im trying to sort it out but ive been abandoned by our health service on the matter. It is really bad. I can just about hold my own as i know what im talking about but it can be very hard as they try to bamboozal you and you get depressed and come away feeling demoralised because some consultant has basically fobbed you off. I understand maybe this is why your friend doesnt want to talk about it. That and well meaning people ( not saying your ) but there are alot of people just generally out there employers , well meaning but misinformed "friends" etc that come out with all sorts and your friend probably sighs to herself and thinks that doesnt work or ive tried that thanks!!! Good luck pm me if you want any time. Im so angry about the situation with this disease i feel lik elobbying parliment to get things improved. It is dire out there. All i can say is that its good she has you as a friend.

ps excision of the endometriosis ( cutting it out ) or a particular special technique ( i cant mention names ) but it is like a chemical peel i think is ok if the surgeon says lasering it off get up and leave and dont go back it doenst help as far as im away and may make it worse.

All the best C