Hi fellow warriors 🤗

[Louwalt]

Hi All, I have just joined this group after my lovely consultant recommended it to me. I don't want to bore you all with my story but I'll breifly go over it. I have suffered from heavy painful periods for as long as I can remember, since they started in fact, aged 11.

I was first diagnosed with endometriosis when I was 23, had a laparoscopy & had it lasered off. Was fine for a few years then it come back. Fast forward 16 years, 3 more laparoscopies, 4 babies (thank god, I know how blessed I am) and a hell of a lot of pain, constantly passing out because of abdominal pain, bleeding from my bottom, doctors appointments, unnecessary surgery & misdiagnosis 3 times ... and here I am, with confirmed stage 4 Endometriosis & Adenomysis. I have nodules on my bowel, my left ovary is stuck to my bowel and I have tumors in my womb among other stuff.

I am in pain daily. I struggle being a mum to my kids as I'm always exhausted, like the most tired I think it's possible to be and intimacy with my husband is really suffering as it's just too painful. I have hardly any social life as I often have to cancel plans and it frustrates my loved ones I know it does. I feel utterly useless 😪

I have just left my consultant and am having my laparoscopy on Tuesday then will get a date for the major surgery (possible bowel resection). I am absolutely terrified.

I have been put on Provera in the meantime but this is giving me terrible headaches, insomnia & night sweats 😳

Anyway I guess I am just feeling a bit sorry for myself. The diagnosis has scared me a little, the fact that even I as a sufferer didn't understand Endometriosis or the havoc it can cause on a life. I had no idea there was a stage 4 (or 1,2 or 3 for that matter!) I'm not even sure the tons of GP's I've seen over the years did either 😂 🙈

It's just such a misunderstood, played down disease. Even when I've told my family and friends they seem to poo poo it! My sister in law has a bad back & they have all made such a fuss of her (and rightly so bless her) but I feel like I Just have to get on with it as it's 'women's problems'!!

I want to do all I can to raise awareness so that the younger generation won't have to suffer the way I have.

Ok I'm ranting now sorry. I just wanted to say Hi 👋 to you all.

Thanks for listening

Xxx

[kait109]

I'm sure everything will turn up right and well in the end. Goodluck, Louwalt. Thoughts will be going your way.

Stay strong for your little ones.

If you worry, you suffer twice. I tell myself that every day, and it is hard to not worry. But if you do, it will cause more harm than good. You can't change the future of your fate as of right now, so there is no need to worry about the outcomes.

Goodluck and stay strong.

❤️

[Louwalt in reply to kait109]

Ahh thank you, such a lovely positive message xx

I'm usually a very positive person I think I was just feeling a bit sorry for myself last night. I'm replacing any negative thoughts with a positive one 👍🏻

Louise xx

[Hidden]

If you have stage 4 and bowel endo you need to make sure you are being seen at a bsge centre. This list is here. If your hospital is on this list, please get yourself referred to one that is.

bsge.org.uk/centre/

I had my major surgery for stage 4 with adenomyosis/bowel involvement nearly 4 months ago, and I'm doing really well. I had a total hysterectomy + removal of ovaries and tubes, then excision of the endo from the bowel and elsewhere. First month was rough, but it's totally been worth it.

This link shows the data for the bsge centres and the bowel surgeries carried out. As you can see, it shows that bowel resection is very uncommon, and it's pretty reassuring. I went into surgery not knowing if I would need a resection, but in the end they were able to shave the disease off the bowel.

If you have any more questions about any of this, please ask. x.

[Louwalt in reply to Hidden]

Hi, thanks so much for your reply. That sounds very reassuring & I'm so glad to hear you are doing well 😀

Yes my laparoscopy next week to confirm what they found on the MRI is at a private hospital however the advanced surgery is being done at an Endometriosis centre where I live (I know I can't mention consultants names but mine is one of the top Endo specialists in the uk). My husband really researched & made sure I'm properly looked after.

I'm really considering a total hysterectomy but it just feels like such a big decision to make. My mum had womb cancer & had a total hysterectomy aged just 28 & said it was the best thing, so definitely something I am strongly considering.

Louise x

[Hidden in reply to Louwalt]

It was a tough decision, but the consultant basically said that they wouldn't excise the rectovaginal nodule that I had unless I had the hysterectomy at the same time, because if they just excised the nodule, the bowel and uterus would stick back together when scar tissue formed in the cut surfaces, and if I then needed a hysterectomy for the adenomyosis later, the risk of permanent damage to the bowel when they cut into it again was too great. He said that the only reason not to have it would be if I wanted more children, but TBH at 39 with damaged fallopian tubes and endo everywhere, I would have needed fertility treatment, and the chances of it actually working were very small. They removed my ovaries to reduce the chance of the endo returning and again me needing more surgery to the bowel. I had a two step surgery - one back in November to map the disease and drain my endometriomas, then the big surgery in march, with a course of prostap in between.

I won't lie, I am finding surgical menopause hard. But I was desperately unwell before the surgery and had no quality of life. I was in pain all the time, none of the drug treatments were really working, and the pain during my periods was absolutely terrifying. I had the surgery at the big BSGE centre in London and I have no regrets. x.

[MMB89]

I am totally hearing you!

I recently wrote down all of my feelings and also all my research in a letter to my GP as I felt I was getting no where with them. They wrote back this week explaining they did not know anything about the BSGE centers or many of the other points I have raised.

I would definitely give this a try with your GP as well so that going forward they do not treat others in the same way you have.

Good luck hun and stay strong!!!

[Hidden in reply to MMB89]

It continues to astonish me how many GP's have absolutely no knowledge. Endo affects 1 in 10 women, it's not like this is a disease they see once in their entire career. I was readmitted to our local hosp after my last surgery and was constantly having to explain to the gynaes there what surgery I'd had, and why. One of them in particular was really snotty with me, asking why I'd gone to the bsge centre instead of just having the surgery there with them (erm, BECAUSE YOU COULDN'T DO IT!!!!). I saw a similar attitude at my GP's surgery, utterly clueless, advising me to have an abdominal hyst at the local hosp 'because people will visit if you have it here and they won't visit you in London' and that was after one of their GP's insisting that I couldn't possibly have endo because I didn't have the symptoms.

[gwen80 in reply to Hidden]

Oh my word! There's no wonder we're all on forums researching things, swapping info, getting advice from each other if our GPs are so uninformed. Before diagnosis, I was told more times than I care to remember (by my GP) that I couldn't possibly have endometriosis as I didn't have heavy periods. It turns out I likely have adenomyosis asw ell - that was never even mentioned. I had hoped things might have improved with GPs in the 7 years since then.

As if you'd decide where to have surgery for a poorly understood condition based on how many visitors you might get? Crazy. I got a few remarks at work about why was I going all the way into London, aren't there gynaecologists in Hertfordshire? If you have a poorly understood, progressive condition, why wouldn't you see the best specialist you possibly can?

[gwen80]

I hear you! I'm getting a similar response at work at the moment - it's just my lady bits, why do I need an op etc. V.v. frustrating. A friend told me I needed a scan. When I told her it generally doesn't show up on scans, she couldn't get her head around it. The condition is totally misunderstood and it makes me very angry that because it's associated with the reproductive system, it's somehow different and less important than any other condition.

I'm encouraged that celebrities have come forwards to talk about their endo experiences recently. I think in the past I've felt some shame or stigma, but not anymore. As well as awareness, I'd like to see more research being done. I guess people find it hard to believe that surgery is a method of diagnosis in 2017 is because what other condition that affects so many people has such an invasive diagnostic procedure in this day and age? Why do we still know so little about it?

Good luck for your laparoscopy next week - we want to hear how you're getting on. Keep your chin up and keep posting.

Take care x