Let's talk Endometriosis..

[BreatheFocusRelax]

Hi.
I have stage 3 deep pelvic endometriosis.
After suffering for 10 years (maybe more) I was finally diagnosed last year.
I am due to have my 1st laparoscopy this year (date unknown at the moment) but I am struggling with pain.
I have very sparse periods.
The pain isn't only when I'm bleeding but it's 24/7.
It's effecting me badly & playing havoc with my mental health.
I have asked if I can have a hysterectomy but due to being 31 they won't allow me to have one.
Beings I have 2 healthy children & not wanting to grow our family anymore, it just seems like the best solution for me.
With regards to pain, does anyone have any good remedies that work for them?
I'm willing to try anything to ease this pain.

@BreatheFocusRelax Sorry you have this too, it is completely shit. The every day pain, are you taking any pain killers for that?

I used to have that every day pain but a drastic lifestyle change saw me with very reduced pain, basically I stopped working and became a sahm. Now I am not suggesting you do this but it made a massive difference to my mental health, on very bad days I didn't have to push through and go to work etc and juggle childcare. Instead I could just relax, listen to my body and give it what it needed. And no I didn't have any family help as I lived too far away. Dh was absolutely amazing and my children probably watched a lot more tv than they should but they turned out great.

For period pain I use a plug in heat pad, a TENs machine and a hot tub obviously not all at the same time. The hot tub is amazing because it allows you to get into different positions unlike a bath. As it feels like labour pain when I am on my period this is like a birthing pool that stays lovely and hot. Also a massage gun that pummels, which Dh uses on my lower back. It feels like how the TENs machine works in disrupting the signals.

I also did a pain management thing 20 years ago so sort of like hypno birthing I suppose. You acknowledge the pain, you know what it is, our bodies tell us something is wrong when we are in pain but labour pain we understand why we feel it. I do the same with the endo pain, I sort of accept it. I hope I am explaining this properly. With mine now though I know there is an end to the intensity because I know my cycle well, well I did until I started peri-menopause. I am almost 50.

Prescription pain meds when I do take them make me feel absolutely sick and when the pain relief wears off I am still affected by the codeine so I rarely take it. I have an incredible Dh and very supportive teenage boys who are great at looking after me if I need anything.

It took me around 10 years to get diagnosed and another year plus to get a laparoscopy. I took Duphaston and then Synarel for 6 months to shut my cycle down, then a laser laparoscopy with dye to flush my Fallopian tubes. Then I had 2 babies (told now or never.) I became a sahm when Ds1 was a toddler and before Ds2 was born.

I have tried every herbal remedy out there, none seem to work for me. I constantly look out for new information to ease pain etc, we can live in hope.

Naproxen and co-codamol have helped in the past. One time I was in a lot of pain on holiday in Italy which led me to going gluten free for a while and tbh I felt like I got quite a bit of a relief from that.

But the thing that really eased the pain was surgery. I really hope you get some relief from it too.

Oh also never underestimate a well-placed hot water bottle (although I’m sure you’re already no stranger to this). All the best.

@EndoSufferer What a helpful and refreshingly honest post!

I too suffer, daily, a few years ago it was daily period type pains, surgery helped with that!

Now the lesions are affecting my nerves and muscles around my lower back
and pelvic area. Extremely tight, aching and sore. Currently on over a years waiting list. I too use a massage gun, massage shiatsu machine, tens machine, multiple hot water bottles and baths! Yoga helps too but I’m so tired that I rarely feel up to it!

I really sympathise OP, it is absolutely brutal and completely debilitating! I fainted last week due to the pain, it’s so hard to explain how much it affects your life!

I’m the same will literally try anything! Sorry you have to go through it too!

@EndoSufferer
Thank you so much for your fantastic reply.
I will take all what you've said on board & hopefully they'll be something there that'll help me!

@vincettenoir
My DH has just brought me today a really good hot water bottle to reply my 'better seen days' one!
It's a long one that I'm able to wrap round my middle & it does help but just wish it would take it all away!

@FarmtractorJJ
It just consumes you doesn't it.
The pain is horrific. I just wish women's health was more spoken about.
We do have to go through so much.
Oh bless your heart, hope your okay.
It's nice to not feel alone in this & for other people to understand where your coming from.

@FarmtractorJJ anything to help anyone else who suffers. If you told me to lick a live slug as it may help I would do it.

I suffer from fatigue so need to sleep every day which sounds great but is a pain in the arse for holidays or weekends away also school pick up which fortunately I don't have to do anymore. I am out for a whole day for my friend's 50th but will power through and then have about 2 days of feeling completely wiped out and not able to do anything. Exercise etc just wipes me out so what is the point? I really should do some yoga.

Pain wise I get numb legs from the deposits on my nerves in my abdomen, hips like they are in a vice, of course ovary pain but mainly on one side which is where I have a lot of scar tissue (pregnancy was horrific for that non-stretch ligament) it is just a joy. I can't hold in a wee as I have deposits on my bladder so it just hurts a lot. But I choose to be happy because I refuse to let this get the better of me. I have also tried reflexology, Chinese herbal medicine, overhauled my diet (no joy when you cut so much stuff out) and acupuncture in the past.

Endo is shit but I think someone at the BBC either has it or knows someone who has as it keeps appearing on the BBC news website. Nice to have some light shone on it as a medical condition. I was told for years I just had a low pain threshold as lots of women have periods and aren't like this, even my own Mother didn't believe my pain level. So frustrating. Felt totally vindicated with the laparoscopy and confirmed endo deposits and then comparing my pain to being in labour having been through that.

Hot water bottle wise I hate that they go cold and they can be heavy which is why I have the plug in heat pad which is bigger than a hot water bottle so I can put it on my front or back depending which bit hurts the most. I am sorry everyone on here has endo.

I feel your pain OP and everyone else on here too. I'm currently lying in bed crippled with endo pain. I've tried everything from Codeine to Naproxen to Tramadol to Mefenamic Acid but nothing worked or if it did it was only marginal relief.

I was prescribed oral morphine today and have had the first dose. It seems to have helped a little with the pain but it's made me sleepy and docile.

Not sure whether the trade off is worth it as I have a 5 year old to look after.

Please please please consider giving maritime pine bark extract a go. I was in a very similar situation to you. In extreme pain all month long, not just during my period. Doubled up in pain that could only be reduced slightly with heat and pressure. No over the counter pain relief touched it. 2 laparoscopies provided temporary relief but it came back. I knew I wanted children but even so, the pain was so extreme that had a hysterectomy promised a solution I would have seriously considered it (but actually my specialist said that there was no chance it would and wouldn't recommend it). The specialist pushed me to consider getting pregnant as that could help, and spoiler alert... it didn't! Fortunately I got pregnant because I actually wanted a baby, not for a promised cure which did provide a solution while I was actually pregnant and for a few minths afterwards but that was the extent of it! The specialist wouldn't allow me to use the treatment where you get put into medically induced menopause due to my age.

After 15+ years of struggling and 5+ years of diagnosis with endometriosis, I stumbled across some research on maritime pine bark extract. I'm fairly sure it wasn't this paper, as I was taking the Nature's Best supplement which is only 40mg and this paper is based on 60mg. It took well over a month for me to notice changes but honestly, it gave me my life back! Over the counter pain relief could actually make a difference, I started to be able to go days without bawling in pain. Honestly, I'm evangelical about the stuff and very very angry that I had to find this for myself after having my pain brushed off as "women's problems" without even a proper diagnosis for so many years.

pubmed.ncbi.nlm.nih.gov/17879831/

I meant to say no over the counter or prescription pain relief ever touched it!

Chinese medicine from a very reputable Chinese doctor gave me my life back after 15 years of painful endo. Worth a try. It was so effective for me I cancelled my 4th nhs laser surgery after taking the herbs he gave me for three months. I’m menopausal now and it never came back.

I had an endometrial ablation, at 45. It was a day procedure and ended menstruation for me. I think there would be difficulties getting one while younger as I had to confirm I would not be TTC. But it was a life changer.

Sorry you're suffering, OP.

I don't like to chuck something in that might be difficult to hear, but the reason they're not keen to give you a hysterectomy at this stage probably isn't much to do with your likely family plans. Unfortunately, it isn't by any means a certain cure and does have far more significant health downsides than was once thought. Nowadays it's generally regarded as a good option primarily when the uterus itself is the primary source of the pain. If you're having non-uterine pain, which I think is quite likely given that the pain is pretty constant and you say you're not having many periods, you may unfortunately not be a great candidate as it may not be terribly effective. But you'd have to discuss this with your doctor. If it's not likely to be an effective treatment, they may be understandably reluctant to expose you to the downsides.

I would look at other means of pain control as already suggested, but I would also make sure to be operated on at one of the BSGE accredited centres where they can perform excision. You don't mention whether you're at an accredited centre, but unaccredited centres are unlikely to be able to perform excision (unless they're on the 'pending accreditation ' list), which is the current gold standard treatment as it has the best track record in terms of effective pain relief.

I hope you get some relief.

I've bookmarked to come back and write a more in-depth post when I'm not utterly exhausted.
I just wanted to let you know I'm 32 and I had a hysterectomy in November due to endometriosis.
I'll be back tomorrow :)

If you really want a hysterectomy it would be worth you joining Benendon, it costs £11.99 a month but after 6 months you can use private healthcare. The NHS don't want to spend money doing a hysterectomy, they will fob you off with things like the Mirena coil or using hormone treatments, if you go private you have a better chance of getting a hysterectomy.

I had endo in my tubes on my bowel & bladder, I also had horrific periods with flooding, huge clots, terrible pain that made me faint. I had been backward ,& forward to the doctors since I was 17, the only thing that gave me any relief was taking the combined pill with no breaks. My doctor stopped me taking the pill when I was 44 & within a month I was back to square 1, I ended up at urgent care one weekend because I was in so much pain. The doctor there sent a note to my usual surgery asking them to see me urgently to discuss seeing a gynaecologist, I got a referral & saw a consultant who did a laparoscopy & then diagnosed me with Pelvic Inflammatory disease & an ovarian cyst, I had a second lap where afterwards he came & apologised because he could now see endometriosis. I spent over a year on norethisterone to stop my periods but the side effects were awful, my hair fell out, I had horrific mood swings & was suicidal. When I next saw him I begged for a hysterectomy, I had a battle to get funding because my CCG wanted me to have a Mirena coil but I finally had my op 3 months later, I had it done keyhole & I could tell within a week that I was feeling better than I had ever done since I started my periods, no pain or moodswings, it had been worth all of the battle to get it done.

@pinknsparkly

That sounds amazing, I'm an avid believer in herbs for health care but never heard of that one.
I hope posters will pick up on yours and give it a try.

I had endo in my late teens/early twenties. I knew something was wrong because sex was painful deep inside.
It was eventually picked up by having a laparascopy.

I was given hormone treatment to simulate pregnancy, progesteron I think. Wasn't too keen on it but carried on with it. I also at this time got into every natural healing going, from acupuncture, homeopathy, Bach Remedies, colour and energy healing, herbal teas..... I still prefer it to this day, I never take prescription medicine or need to (I don't judge people who do. Each to their own).
It's like endo was the big whammy and I'm generally pretty healthy all-round. (I'm in my late 60's).

After about 10 years of never using contraception I became pregnant. I have a beautiful adult son now. Did it all solo. (Which brought its own challenges of course).

Anyway, that's my story with endometriosis. I really hope each of you finds your own cure on your journey of this awful disease. For me it seemed to be the combination of natural healing and medical intervention.

@pinknsparkly can I ask what Mari time bark is? Tablet tea? Etc.

sorry to jump on op I suffer with endo finally able to pay to get it removed 3 months ago and I’m still struggling in different ways. Just wondering if I should do more to help. So paranoid it’s on other organs that weren’t seen or weather after all this time it’s even endo that causes me these issues. Also spotting so much more since the op and just at my whitsend with the health anxiety over it all x