Just saying hi and offering any support a... - Endometriosis UK

Endometriosis UK
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Just saying hi and offering any support anyone dealing with endometreosis needs if I can xx

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Hi,

I'm 33 years old. I've been dealing with endometreosis for the past 4 years. I have had horrific experiences of the NHS specifically in the diagnosis and subsequent treatment of endometriosis, resulting in me spending a lot of money on 3 major surgeries privately.

I finally decided to go through with a full hysterectomy. Although theres no guarantee I will be pain free, theres a 90% chance (according to the US ) so I'm playing the odds!!!

I have trawled through hundreds of websites, read countless medical journals and researched endometreosis every which way I can. I'm hoping upon all hope in this world that it will not return- but I'm ready if it does.

I have experienced chronic pain that I dont think any description can quite do justice, misinformation, dismissal from medical professionals and utter utter fear that my life was basically over.

Right now, I'm recovering from my hysterectomy amazingly well, at home with my 3 gorgeous boys and my husband is doing his utmost to keep our world spinning.

I feel a deep calm that I have finally taken a step that could change my life. I think being told you have this chronic condition that is painful and debilitating in so many ways, and you just have to live with it is evil. And I want to reassure every struggling that there are diets that help, there are laparoscopies that help and if you're done having a family theres loads more that can help.

If you need to talk, moan, scream, cry (via message😂) please feel free to push it in my direction. You will receive nothing but love, understanding and support.

I'm hoping my hell is ended, I hope to support anyone through theirs that I can xxxx

12 Replies
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Love you and speedy recovery dear!

Before do you have a constant pain 24/7? If yes how do you cope with pain?

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in reply to introuble

Hi untrouble,

Yes unfortunately so, my very first experience of endometreosis was pain 24/7 for 2 months before my first laparoscopy.

So I had 2 pains, one was an underlying servere ache, like really bad period cramps that sort of crept up on me over time. Sometimes i wouldn't even realise it was bad until I realised I was grinding my teeth because it was there all of the time.

Then on top I had a sharp stabbing pain, as if a hot knife was piercing my lower abdomen, being held and then removed, over and over again. That second pain no amount of painkillers would help, and it turned out to be the endometreosis had twisted my ovary and stuck it to womb, it could have ruptured at any time i was very lucky.

For the underlying cramping, I can honestly say endometreosis diets, combined with excercise and cutting out inflammatory foods does wonders. I can give you a brief low down on those if you haven't been given them before. Ibroprofen and paractelamol together work best with flare ups because the endometreosis bleeds cause inflammation not just pain.

Painkillers are tricky as endometreosis is closely linked to IBS, so too much codeine can give not just constipation but irritation in your bowel compounding the cramps. It's a vicious circle.

I'm not going to lie I've found the best pain relief is a laparoscopy removing the endo. Once I'm in a good place, the hormone treatment, food, exercise etc all help control it but it has to be minor to be kept in check.

Do you have specific pain? What have you tried so far? What have you been given to manage the endometreosis?

Big hugs, hope you're keeping you're head above water xxx

What does the diet involve? Does it help?

What other treatment did you try before the hysterectomy? We’re none of them effective?

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in reply to Purple40

Hi purple40,

There are a few different diets for endometreosis, its definitely a trial and error but I can give you the absolute basic changes to try that would be likely most effective.

In the first instance it was so severe I was in too much pain to eat never mind about worrying about the diet, but second and third time round with stage 1 and 2 endo, the diet controlled the flare up and I felt a dramatic change in the cramping/aching/swelling pain using diet.

So heres the Joy's:

Gluten free

Lacto free

No processed food esp ready meals

Small amount of meat, esp red meat

Lots of fish (omega 3 is super good)

No fizzy drinks, reduce sugar as much as pos

No alcohol

No caffiene

Tons of fruit and veg.

It results in a huge amount of cooking and prep work theres no doubt. I cook different meals for myself to my husband and boys almost daily. But a few glasses of prosecco at the weekend and my stomach would bloat and I'd cramp for 2 days. Once you cut everything out for a month or so, reintroduce one thing at a time and you'll very quickly see what your body can tolerate. There are more specific foods that are good and bad, a general web search brings tons of endo diets up that list even fruit and veg that are better or worse, but I found this useful as a start.

I can promise you I tried a lot. I even had our third child as a "now or never" warning from my consultant as she knew we wanted more children and had the additional hope that would get rid of it for good. But 9months after having my baby it was back and coming up to the year mark I gave up and had another surgery. Things deteriorated this January as I had symptoms return and got severe migraines and had to come off the contraceptive pill. Progesterone only hormone treatment gives me random panic attacks which I cant risk driving 2 kids around. So we started zoladex injections. They were ok actually, they worked brilliantly for 3 weeks a month, but the menopause symptoms were hard and i was losing a week a month to bleed through pain from the endo and the side effects of the injections. But every month the pain was getting worse and I only had until July before they stopped altogether and I had no plan of how to control it. I was offered danazole, but it's an old drug and the side effects are truly scary.

I still had the option of ablation where they basically sear you womb on the inside. But that basically makes it impossible to have children and after 5 years the scarred tissue starts coming away. Considering how aggressive mine has come back, my last surgery was sep 2018 and by Feb it was confirmed, i felt this was my only logical step.

Again I reinforce all the evidence proves a hysterectomy is no guarantee of pain free living, I know 2 ladies who had hysterectomies and the pain returned. Endo can be microscopic so even when your consultant feels they got it all, they may not even be able to see some of the cells hiding here and there. Everyone has to decide a course of action for themselves and trust me at 33 this was a very tough decision. Selfish as it is having 3 children I did want one more but I had to put my health first and prioritise my children who need me fit and well. Having done it I know it was right for me and I'm mentally preparing myself for the worst case scenario of it returning in the future.

What treatments have you had or been offered so far, if you dont mind me asking? I understand if you dont want to talk but here to listen if it helps

Xxxxx

Your post made me tear up a little, I’d love to chat about your journey and ask for any advice for mine, if that’s okay. I’m happy to hear that your decision for a hysterectomy is so far looking like a great decision. How have you found NHS? I’ve so far stayed within NHS, but don’t know whether it’s best to start saving up for private.

I’m 26 years old, not yet ready for children but would love to start trying in the next few years (but equally anxious about complications).

I was referred for potential endometriosis over three years ago, and was essentially confirmed through symptoms and lack of anything else showing up on scans. I was pushed away from laparoscopies and was told that it is like “poking a bear”. I’ve tried most contraceptives and currently on the Mirena, but I fear it’s got worse and worse as the years have gone on. For the last 6 months I’ve suffered bladder pain and sometimes bowel, if I’m ever fairly desperate for a wee it suddenly feels like there are loads of elastic bands being stretched from my bladder to all over my stomach, and unless I can get to a toilet soon, it’ll hurt like that for the rest of the day. It might of course not be related, but I am worried that this now means my bladder/bowel are involved in endometrial lesions.

I’m now at the stage of considering going back to my GP and asking for a different person to be referred to, as I’d like to discuss a laparoscopy for conclusive diagnosis and removal of anything visible. But in honesty, I’m petrified of the surgery, it feels like it’s impossible to get an actual endometriosis expert to perform the surgery from start to finish, so instead I’ve read that people often have to have multiple surgeries with different specialists. I’m worried that I haven’t pushed hard enough over the last couple of years but equally feel scared to start now.

So glad to hear you’re turning things around and have a great family! Fingers crossed for you :) xx

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in reply to Harley9

Hi Harley9,

Thank you for responding, I'm so sorry you're having to deal with these issues.

Your post fills me with rage. im seriously considering looking into starting my own blog to try and support women at a younger age struggling with this as it's quite clear the NHS are not knowledgeable and dont have the resources to cope.

Theres no easy way of saying this, I think you need a laparoscopy sooner rather than later. You could start investigations on your bladder, and I have heard of some endo showing up on bladder scans specifically, but it depends whether they agree to do your endo referral simultaneously and it will be and endo specialist that you need.

My advice is to do some web searches on gyni consultants in your trust that have good profiles and specifically deal with endo. Then go to your gp and insist the referral is for that consultant only.

After my first laparoscopy privately due to waiting lists, dor my second I tried to go back through the NHS. I couldnt be guaranteed my consultant and was offered a registrar. I refused and faced another 3 month wait just to see my consultant. So I went private again.

Your fears are justified with regard to who does your surgery. However, I can assure you the surgery is less scary than you think, and even a tricky procedure can be recovered from well given the right tips - which I promise to help you with!!! The relief you will feel IMMEDIATELY from the surgery is worth it all. It will be about 4 days post OP that you realise the chronic pain you've been living with is gone. The relief is heavenly.

Most important is you cant let this get any worse. If you haven't already, start a daily diary of pain, bladder and bowel issues. Start on the diet for endometrosis to prevent flare ups and try daily excerise if you can.

You need to research endometreosis mainly on US sites, not UK. The US sites are hugely more informative and I find the NHS sites focus purely on pain control which I find flabergasting and outright dangerous.

So far my most successful pain relief has been laparoscopy to remove the stuff!!!

Any questions- throw then at me. I wish I could be more positive about the NHS, I hope a few people might come back to you with positive experiences they've had but sadly mines been so aggressive and severe I've gone private every time.

Huge hugs xx

Harley9
Harley9
in reply to Abbbb

Bless you, thanks ever so much for the reply. Yes, a blog would probably be incredibly useful! I’ve joined Nancy’s Nook fairly recently which is full of information, but a blog / support site would be great too! I go through fazes of being furious with my NHS and referral journey, but then feel furious with myself for shying away and not pushing harder. But yes, it’s very true that UK / NHS don’t have the best route for endometriosis. Would you mind privately messaging about your private route (which companies and what treatment cost plans they offer)? I think I might have to consider this route instead, or at least have it set up as a Plan B.

How have you found recovery after the surgeries?

Thanks so much for the US site tip, I’ve been trying to stick to UK for relevance but they do mostly seem useless and outdated.

xx

Hi. I’m also having full hysterectomy shortly for endo ( I have chronic pain like you : every day over a year with two or three flare ups a day: can’t even drive any more because of it). I had a diagnostic lap: the gynaecologist didn’t know what was wrong and so she went in, saw, and came out without touching anything as it wasn’t her specialism. Ok, but then I ask for a copy of my medical notes and find out they had done a blood test : ca125 which was quite elevated. This means cancer or endometriosis. To cut a long story short it’s possible to rule out cancer so I ‘m wondering why the ca125 isn’t used more often as a diagnostic tool. Hope you are doing better now.

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in reply to lap1

Hi, i just realised reading you message that you're already booked to have your hysterectomy. If you need any support let me know. I am 5 weeks post now, and recovery is slow even though i had it laparscopically.

Also, please please visit the site HysterSisters and sign up (for free). It is a US site that has so much information, including information about hysterectomy for endometreosis and why it often still comes back. It has literally been my life line through this decision, and also supported me emotionally to understand that there's a real possibility i will never be rid of endometreosis and it's important to keep up the diet, reduce hormones etc to prevent another flare.

The UK gives very little information or support through having a hysterectomy, privately or on the NHS. I have heard of a number of women in the UK having a hysterectomy and then being advised HRT including estrogen - this is a big mistake as microscopic endo could be anywhere in your body and will always reproduce given estogren. They have also found that endo produces its own source of estrogen, which is how it reoccurs after even your ovaries have been removed.

Really hope it helps, i'm still early in my recovery but my only real issue is swelling of my stomach and i can feel pulling stiches when i do too much. But fingers crossed, another month and I will be able to tell you it was the best things i've ever done!! and hopefully will be the same for you!!! xxx

lap1
lap1
in reply to Abbbb

Thanks for your reply. I’m 49 and have adult children so the consultant told me a full pelvic clearance was the way to go. I’m getting done in Guildford with someone recommended here on the forums. I am quite a bit older than most people posting here and I still don’t understand how I got endo at 48 with no prior signs before but there you go. I’ve also tried to read up and I stumbled on the Cochrane 2009 review which says hrt after surgical menaupause may not cause recurrence. In the study only 2 out of 115 women on hrt had recurrence. Those are good odds for me given no hrt and osteoporosis so I’m leaning towards taking it and see how it goes. Thanks for tip on American sites glad to hear that five weeks post op you’re bettter

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in reply to lap1

100% check out hystersister and get signed up - they give you different forums to join leading up to your hysterectomy and they give you updates weekly in recovery so you know exactly what to expect. I had about 50 of us on the same day put in the same forum and it was amazing as everything they asked I had a day or so later. So much information and suppor, especially emotional it's really good.

I have everything crossed it sorts everything for you with no reoccurance. I too am playing the odds game, it's more from the American sites and my consultant that I've been advised the no HRT, but then it's more common to have the operation in the states at a younger age than it is here so maybe that's why the US have a higher rate of occurance.

The one thing I would say is I haven't found it emotionally very hard at all, just physically. Can highly recommend laparoscopy and vaginal hysterectomy, my OP was at 5pm, I was up and walking by 9am the next morning, catheter n packing removed and home next day. First few days was saw gerrjng out of bed but was able to walk no problem very early on. It's easy to iver do things, but the 3 tiny lines of stitches were healed by day 10. My kids cant even find one of them now.

Hoping all the best for you xxx

Hi lap1,

Sorry you've been struggling so much. So cancer can be ruled out with bloods, but endo can not. So whoever's told you that is incorrect. Ruling our cancer is good, but sadly that just reinforces the diagnosis of endo - and it sounds like your laparoscopy does also.

I am at a loss as to why so many people are having laparoscopys to confirm endo, but dont have th specialism to treat it.

I had 3 laparoscopies before my hysterectomy. Each one got easier to recover from and took away all of my symptoms for a time. I would NOT jump to a hysterectomy unless you are at a natural age for menopause.

A laparoscopy removing the endo should relieve all your pain. If you are not considering children, they should fit you with a coil in the procedure, if you are considering children, then taking the mini pill or combined pill should keep any residue of endo at bay. There is also a strict diet associated with endo that reduces if inflammation in the body and prevents the endo from producing as quickly.

The problem with the hysterectomy if it again takes away the symptoms of where your pain currently sits, it doesn get rid of all the endo in your body and not to forget that endo can be microscopic inside walls of your organs!! Joyous disease. I have had a total hysterectomy including my ovaries. And as endo feeds on estrogen, I cannot have HRT. Without estrogen my bone density will drop and I could be looking at osteoporosis as early as my 40's. I also worry about too much progesterone as your body craves estrogen so much it can change progesterone into testosterone, and testosterone into estrogen.

Sorry this is such a long message. Please private message me with questions if you need. Having done it myself I would not presume to know what's best for you I would just beg you be cautious, when you're in severe pain it's easy to try n cure it aggressively in the short term, but there are other methods especially if hormones r still an option for you. Treat the endo, then get hormones to dampen anything left - that is by far the best option for your long term health. I promise you I know how stupidly hard it is being in that pain. You need it removed immediately.

I also went private for all of my care in the last 4 years and be happy to advise you on cost etc in on the skirts of London so I know it is cheaper elsewhere, I just wasnt leaving my consultant!!!

Wish you all the very best I really hope I've been helpful - pls dont lose hope and again pls message me with specifics so I can give you more advise that suits you!!! I'd hate to giv you the wrong idea about any of this from my experience. I've read enough scientific journals to sink a battle ship!!!!

Xxxx

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