Anyone had the same?

[BlueMocktail]

Hi,I wonder if anyone can help me, I had an ultrasound today and was told I have endometriosis, fibroids, a cyst on my left ovary and my right ovary is stuck to my uterus. They're going to refer me to gynae but have been warned this can take months....I'm 43 and don't want children so honestly hoping they just offer me a hysterectomy. I refuse to take hormonal contraceptives as they mess with my mood and I had suicidal thoughts when I had the Mirena coil years ago. Any ideas what treatment options they might offer me??

[Scoutybob]

This seems to vary massively from person to person from what I can make out in terms of what consultant they have as well. I'm stage 4 deep infiltrating endo, bowel, uterus and ovaries adhered together, kissing ovaries with bilaterial endometriomas up to 7cm, endo through tubes as well as focal and diffuse adenomyosis.

I had my first consultant meet this week. I have so far been offered a more conservative surgery excising the endo, unstucking organs, taking cysts off and removing tubes. Possible bowel resection and possibly losing one ovary. They've said hysterectomy would be last stage and sounds like a separate step if this didn't work. I know technically hysterectomy's don't cure endo, it's the full excision that you need but some women find it helps.

I'm 41 and have a complete family so I thought it might be offered as I don't want to be going through a repetitive surgery cycle but currently it's not on the table.

[BlueMocktail in reply to Scoutybob]

Wow, you've definitely got a lot going on down there. Did they diagnose all that from the ultrasound or did you have more investigations? Like you, I definitely don't want to be going through a repetitive surgery cycle

[Scoutybob in reply to BlueMocktail]

They found a lot of it at a private ultrasound and then saw more with an NHS MRI about 6 months ago. I'm now being sent for another MRI next month. I think it's to see if there's progression or if they need to take a different surgical route.

[BlueMocktail in reply to Scoutybob]

I'm lucky enough to have private medical insurance through my work so have made an initial appt to see a consultant later this week and see what the next steps are.

[RosieFalkor]

Hi,

I have severe Endo and fibroids. I’m on the waiting list for a hysterectomy with excision of endometriosis. They are more likely to offer a hysterectomy because you have fibroids but the hysterectomy won’t help the endometriosis so you will need excision as well which is more complex.

I feel your pain with hormonal drugs - I’ve had a nightmare with Mirena and when I went to get it removed they couldn’t find it!

I hope you’re seen and get some answers soon

[BlueMocktail in reply to RosieFalkor]

Thank you, I hope you get your hysterectomy soon and it solves things for you. It really does suck to be a woman at times!!

[Sunset-lady]

I have this but they didn't know I had it when I went in for a hysterectomy. I'd already had a fibroid out.They abandoned the hysterectomy as i would have needed a specialist and a bowel surgeon. They may offer you zoladex for a while which shuts it all down and puts you in chemical menopause-you don't have to take hormones with it at first.They will ask when your mum went through menopause too as if it was early you might be too. At least they know what's going on. They don't like doing a hysterectomy if you are early 40s. It has a huge impact on your body and there's always the danger of prolapse. However, I totally understand why you want one. I wanted one too. Good luck x

[BlueMocktail in reply to Sunset-lady]

Ahhh thank you! I hadn't heard of Zoladex so will do some research into that. My mum didn't go through menopause until 51 but I do feel like a lot of my symptoms are those of the menopause so maybe it's happening earlier for me that it did for her x

[Sunset-lady in reply to BlueMocktail]

You're probably in peri menopause. This is the years prior to menopause. I started at 41 and I'm still going at 51!

[BlueMocktail in reply to Sunset-lady]

Yeah I've done some research the last few days and I think I am as well. So many of the symptoms match up to what I've been going through the last few months and also the hidden symptoms of endo - acne and shortness of breath - have been terrible for me xx

[GlobalTraveller in reply to BlueMocktail]

OMG BlueMocktail,

I have been having a major problem with acne since i hit my early 40's. Now it has become widespread over my arms, shoulders, back and a few on my upper chest and buttocks. I've only been recently diagnosed, although I've had symptoms since early teens with endo. Nobody has linked my skin condition to endo!!!! This is new information for me and I have been itching and scratching to the point of scarring my skin! Non of the lotions or potions tackle the problem, but ease the itch. I'm going to my brothers wedding soon and I have to cover up my arms from fear of embarrassment and the unsightly look of the scarred and unresolved raised surface of these spots. I hate them.

If you have any further info, I would be grateful (already done a google search) Thank you for sharing. x

[BlueMocktail in reply to GlobalTraveller]

Hey this is the article I found: healthline.com/health/uncom...

Interestingly I was diagnosed with asthma about 15months ago despite never having any problems with breathing before and have never smoked. I really struggle with shortness of breath though so am going to start logging it so see if it coincides with endo flare ups xxx

[GlobalTraveller in reply to BlueMocktail]

Thanks. Good luck with asthma/ endo flare ups xx

[Field20]

I asked about a hysterectomy after my last op and the consultant said nope, you'd have to be in extreme pain for us to even consider it. You are 38 but there's still a bit of time for you to get pregnant. (I have been trying to get pregnant for about four and a half years now with no luck).So just some info about me, I keep getting blood cysts on my right ovary (one was 10cm!), I have a blocked fallopian tube, a bulky uterus, adenomyosis and endometriosis in places.

He suggested the pill, I said I'd prefer the mirena and he just went back to talking about the pill! Honestly, sometimes they just don't bloody listen!!

[BlueMocktail in reply to Field20]

Oh you poor thing. Everything crossed you get a positive outcome x

[Brambledoggy]

Morning. I had all the same symptoms as you, my endo was “scattered” everywhere including bladder, ligaments, pouch of Douglas, bowel etc. Cysts on ovary, ectopic pregnancy….I never wanted children but even after years and years of serious pain, suffering and problems, was never offered a hysterectomy. I hear it’s not a catch all solution depending on location of deposits/lesions. Works for some ladies, not for others. Risks involved, but I guess that’s any surgery.

I’m 53 now. I was only ever offered a laparoscopy and laser surgery or three! to remove endo which didn’t work as now post menopause I’m still suffering from post menopausal bleeding (I’ve recently had the all clear for cancers) and a lot of my endo pain is back. Especially bowel endo.

I’m on continuous HRT and in the process of trying to get the hormonal balance right. All I can say is try and get the very best advice from someone you think you can trust. Not easy.

Problem is 10 different doctors will tell you 10 different things and offer 10 different options (so confusing) because endo, surgeries and hormone treatments are all so individualised, what works for one won’t work for another.

I have personally found that surgeries didn’t work, or only offered temporarily relief, I was put on the pill (which stopped the pain but again, only masked my symptoms) When I came off it I was back to square one! I didn’t fancy the coil as inserting anything into me is excruciating. Again very successful for some.

I have a lot of pain from scar tissue and quite honestly if I could go back in time to being 17, I STILL wouldn’t know the best course of action.

What makes a huge difference to me is when I’ve gone super strict diet wise, no gluten, no dairy, no alcohol, no sugar. Gentle exercise when possible. Self care. Reducing stress levels. This is the only approach I’ve found that makes any real difference to my pain levels, but it’s hard to stick to on a permanent basis.

Currently reading a book called The Hormone Repair Manual by Lara Briden and found it fascinating to digest. You might want to look her up as she offers a very good insight into hormones, perimenopause and menopause and how to deal with it all. Also very good endo diet books out there and websites offering holistic approaches. Doesn’t help when you’re screaming in pain but I definitely believe in being as educated as possible about the condition, rather than relying on the medical profession to direct you down a path. At least this way, you can challenge their opinion when something doesn’t feel right.

I was naive thinking menopause would be a cure all. Just my luck 🍀 Nina.

[Sunset-lady in reply to Brambledoggy]

So pleased you got all clear for cancer x

[BlueMocktail in reply to Brambledoggy]

Thank you so much and really glad you got the all clear for cancer. Will have a read of that book as it sounds very interesting, have just started The Happy Menopause by Jackie Lynch and finding that very interesting. I've had a lot of problems with hormonal contraceptives in the past so keen to avoid HRT if I can xx

[Cocoacupid]

hun I had some of this and had excision surgery about 6-7 weeks ago I was told a probably needed a bowel resection but thankfully I didn’t need to. I had kissing ovaries endometrioma and bowel and rectum stuck together with the ovaries so I had it all unstuck . Still I’m getting pain quite abit but I think it could be because I have fibromyalgia as well .

[BlueMocktail in reply to Cocoacupid]

Thanks so much for replying, did you have to wait a long time for the surgery? Glad they've managed to unstick things for you, sounds like you had a lot going on

[Cocoacupid]

I had to wait a year and it was awful waiting when I was really struggling . It’s the wait but as it’s specialist surgery they can only do a few surgery’s like this a day due to it being a complicated surgery which means all the people involved in the surgery have to be alert etc. I would phone up in pain to my gp trying to bring it forward to no avail . As a lot of people when they do find out they have endo when it’s found it’s normally very bad and worst endo etc . I can’t understand why you wait so many years for answers only to wait another year for surgery. It’s awful the wait was awful as no pain medicine made me feel any better it took the edge of a bit some of it made me really poorly and not function. I even had the coil and I still was found to have severe recto virginal endo .as so many have said it’s an awful disease and some even liken it to cancer as the cells expand and grow like it does with cancer . It’s more common as there are more specialists in this field now . Sometimes I wish people would believe youngsters when they start having really bad pains as it’s not normal to be crippled with pain and bent over not being able to walk from day 2 to the end of period unless you go to out of hours for an injection to then being able to stand straight. Mine was missed as I had an internal in early twenties said I was fine little did they know 18 years later it’s the Everest form of the disease . This happens to to often when if treated early on you may get a better chance of it not progression . Xx take care

[BlueMocktail]

Wow that's such a long time to wait, you poor thing. Looking back I've had chronic period pain for years but always just assumed it was normal. Over the last 6months though things have gotten horrendous to the point that I've had to take time off work sick and literally crying in pain. Really hope you make a full recovery and things get easier for you xx