stage 4 endo, end of the line? hysterectomy or other opt

[Duckybun]

Hi,

I've made a doctors appointment to discuss my options and just wanted to chat if any one has any personal experience they could help me with?

I have stage 4 endo diagnosed by lap 5 years ago after suffering horrific periods since my teens. I'm 38 now. Diagnosis came about as a result of infertility, GPs were useless for years and only when I went private did I get proper investigations. I was diagnosed with severe stage 4 endo, pouch of douglas was 'obliterated' in surgeons words, bowel involvement and ureters involved. I had radical excision, total peritoneal excision, very deep plaque over an inch thick in places removed.

We have now had our family after very intrusive IVF with full immunes, and have had an ok time of it until the last year or so.

Last period was horrific, 2 weeks late, back pain, shooting pains down the back of thighs, abdominal pains, sharp stabbing pains in the centre, sharp pulling pains on the left hand side of abdomin and horrific PMS which I mostly attribute to pain levels. I feel like I have so much inflammation that my joints are sore, my muscles feel fatigued under little strain and I'm bloody miserable.

If this the end of the line? Do I need to be thinking about a full hysto with oophorectomy with HRT to follow? Or should I just be asking for another LAP?

I'm totally fed up of being at the mercy of the pain and mood swings. I feel like I'm a shite mother, low energy and no fun, little patience etc.

Can anyone who has suffered similar offer any insight into having had a hysto and if its helped? Or opted not to but maybe had a different treatment path? I'm gutted and feeling really let down by my body, I literally felt like I was 100 yesterday, I couldn't stand up properly and just wanted to go to sleep. I have 3 year old twins, this can't go on.

[Blue29]

My darling sweet pea, I’m afraid I can’t give any advice regarding hysterectomy but I wanted to let you know you’re not alone.....I was diagnosed stage 4 about 6 years ago after suffering agony since my periods first started in my teens, fortunately I’d had my daughter by the time diagnosis, which incidentally was only found by my surgeon after going to gp regarding a lump on my ovary......I had endo everywhere like you but opted not to go the temp menopause and hormone treatment after weighing up whether I wanted to risk periods not coming back and having a full menopause early......endo never really left me since the lap and I’ve worked out I have a couple of days directly after my period which are relatively pain free , other than that it’s always there.....I “cope” with painkillers, and try to control my diet as I have found that if I eat too much junk etc I feel sluggish, moody and crappy although I am not disciplined enough to do the full endo diet- although I haven’t had dairy really since I was diagnosed - it’s got to be a really good ice cream for me to want to break! I try to catch myself if I feel the moods and depression starting to creep in. With your situation having little ones I can only suggest asking your partner for a little more help or understanding? Are there friends you have to talk to or pop round for tea? I know there are support groups for endo so go online and have a look maybe? Once your kiddies get a little older you will start to socialise with other mums who, whilst I’m not suggesting you discuss your ovaries with them the first time you meet, its good to feel less isolated in general as motherhood can feel a little like that at the beginning....try to see the beauty in small things and I wish you lots of luck and happiness....now go and have a cuddle with your munchkins!!!!

Ps I DO discuss my ovaries with anyone- I’ve reached the stage that I really couldn’t give a monkeys what people think of me - maybe I’m just getting old 🤣😂😀 !! Much love.

[Catness]

Hi Duckybun (love the name!)

I’m stage 4 and in a few months time have to have a massive lap with possible hysterectomy as my bowel is fused to my uterus and I also have adenomyosis as well. However I know that even if I do have the hysterectomy that’s not a cure for endo, especially being stage 4 as the endo is everywhere. So though it could bring about some relief, unless they excise every single bit of endo I will still have flares of the disease. So that’s probably something you need to think about as it’s no guarantee that it will solve anything and the endo could come back :/

Perhaps a private consultation may be worthwhile to discuss the benefits of a second lap to see what’s going on? Xx

[Duckybun in reply to Catness]

Hi catness,

Yeah I think a second lap is a definitely the first stop.

Good luck with your upcoming op, it’s hard to know what’s the best course of action but whatever they end up having to do I hope you wake up pain free!

D

[wanwood]

So sorry to hear what you're going through. I hope you get some helpful advice.

I can't advise as I'm in a similar stage to one you were a few years ago . . . I'm stage 4 with similar profile and symptoms, currently on Prostap while waiting for my next op. (I'm finding that the Prostap is helping, and some people can be on it long term with HRT if bone density is not a problem.)

Would you mind if I asked you about something you said about your IVF -- full immunes -- was this required because of your stage 4 endo or for another reason? I'm eligible to have IVF on the NHS straight after the next op, but immune treatment is not something that would be available on the NHS as far as I know.

[Duckybun in reply to wanwood]

Hi wanwood,

Sorry to hear you’re on the ivf bandwagon, it’s horrible and I sympathise.

With regards to the immunes, we had our nhs cycle and it was a bit of a disaster from start to finish. We only get one funded where I am so had to go private for our next cycle. We decided to throw every resource at it that we could as I couldn’t bear the thought of having repeated apptempts. Do we went to the ARGC in London who specialise in complex cases and pioneered a lot of the immunes treatments that aren’t available on the nhs. Because of my endo they put me on full immune treatment. There’s so much inflammation etc that my markers came back high in blood tests and had to be suppressed with various protocols. I took 2 courses of humira, was on steroids throughout the stunning phase and then on intralipids in the first trimester. It worked and now we have the twins, so I can’t thank them enough. Who’s to know though if we’d have been lucky without all the extras.

I’m happy to chat more if you’d like more information. The ARGC was brilliant but extremely expensive, though I think more clinics are now picking up on the immunes protocols.

X

[wanwood in reply to Duckybun]

Hi Duckybun

Thank you so much for your incredibly helpful reply! I don't think we could face many attempts, either. We could have 2 cycles funded on the NHS, but there is the opportunity cost as well as the financial cost to consider. Availability of immune treatment in my region at least sounds worthy of further investigation. x

[Sludge78]

I have just had my complete hysterectomy at 40yrs after stage 4 endo returning after op 2yrs ago. I have been put on combines HRT patches to try to minimise risk of it returning. I battled with the decision but the first op to remove was horrendous and I didn’t want to have to go through it every 2yrs, was told the hysterectomy would prob be chosen within a couple of years anyway. Check out the hysterectomy UK site and hystersisters. They have a lot of useful information (if you ignore the scary tales) on other options that could have been available.

[Duckybun in reply to Sludge78]

Thanks sludge,

How long ago was your op?

I know what you mean about facing the prospect of surgery every couple of years, it’s not something I want to do and I’d rather have 1 big radical surgery than lots of major surgeries, especially with young children to keep happy.

I’m fed up of saying, ‘sorry mummy’s not feeling well today’ why should they suffer if I can just get it all whipped out and get in with life without the worry of what next week holds?

Good luck with your recovery, hope it’s swift and pain free

[Sludge78 in reply to Duckybun]

I’m just coming up for 6wks post op and feel great, in fact my recovery has been better than my endo surgery was (they reopened my csection for that too). Just weird when i see daughter suffering with periods knowing I will never have another one, no having to plan activities/work around time of month due to heavy flooding, go swimming all month, wear light coloured clothes! Plus no more smear tests 😀. Yes there are risks attached but my mother was on HRT for 30yrs (they forgot she was on it til hospitalised at 75) and had no issues. Sad knowing I can’t have more kids but hadn’t happened in last 10yrs so chances were slim even with more endo surgery and getting to that age of not really wanting to start from scratch again.

[Duckybun in reply to Sludge78]

That’s brilliant that you feel so good so soon after!

Did you start on the hrt straight away after the surgery? I often wonder if my mood swings, which I know are hormonal, will just disappear after a hysterectomy. I was diagnosed with pmdd years ago and have been on and off antidepressants for years, how I’d love not to have to worry about that anymore too....

[Sludge78 in reply to Duckybun]

Started HRT on the 4th day post op (few flushes etc in hospital). Nauseous the first weekend then fine. I don’t think I was bad with pmt beforehand (hubby may disagree) but not had the pre-menstrual headaches etc. Also found my fibromyalgia symptoms have diminished a bit.

[Duckybun in reply to Sludge78]

Interesting you mention Fibromyalgia.

I seem to have inherited my endo from my dads side and onlyvhave 1 aunt who had such bad endo that she had a full hysterectomy at 28, she’s now in her 60s and had fibromyalgia. I wonder if the two things are just two forks from the same root?

[Sludge78 in reply to Duckybun]

There are some overlapping similarities so makes you wonder if misdiagnosis and endo route of all problems

[Minnskimoo]

Hi Duckybun

So sorry to read about the pain and angst this much misaligned disease is causing you right now. I totally get all of the above. I was In the exact same situation 20 years ago.

After seven agonising years of being told many things I didn’t have and that it was mostly my age....( 39 at diagnosis!) I resorted to a private consultation ( I had reached a stage where I was passing out with the pain) . It was confirmed I had, indeed, Stage 4 endometriosis. My ovaries by this time were the size of grapefruits, I had adhesions and chocolate cysts stuck to bowels- and as the consultant said after my hysterectomy; “my dear, your insides were an absolute mess!” Really? 🙆🏼

The idea of no more pain and intermittent bleeding, fainting and general malaise was an extremely welcome thought- although a total abdominal hysterctomy isn’t something to be taken lightly. And of course, to undergo such surgery is an individual choice-if given one! My daughters were teenagers by this time and I had no thoughts of extending the family, therefore that made my decision a little easier. Not quite so for those still trying to plan for a family.

All that said, I couldn’t believe the difference after feeling so rotten for so long, how I was pain free (after op recovery) and like a different person. However I was placed on HRT therapy (estrogen patches) as I had a risk of osteoporosis due to no ovaries and the fact my mother had it and sister has it. That again is something I believe is a matter of choice and what works best for the individual - how you feel about the benefits/risks.

I agree with sludge78- try to look at the options from a positive point of view- and not be put off by some of the scary stories and experiences that appear on the ‘net.

Good luck with your decision. I truly hope you find a way to some relief from all of this very soon! 🤞🏼

[Duckybun in reply to Minnskimoo]

Thanks minnskimoo,

Glad you had such an improvement after the surgery. That’s it exactly. There are rare days when I feel like I have a spring in my step and my head is clear and I’ve got nothing holding me back, I feel like I could conquer the world. They are getting vanishingly more intermittent. I could count on one hand the number of days I’ve felt like that in the last few months. This disease has stolen that from me and I want it back before I’m too old to enjoy it!!!

Thank you so much for your support xx

[Minnskimoo in reply to Duckybun]

🤗You are most welcome! xx

[Mandy79]

Hiya, I'm 38 too, and my symptoms sound similar to yours, I'm 3 days post hysterectomy so it's a little early to say but from his findings it seems like it was the right thing to do, he told me if I'd left it much longer it would have gone into the muscles of the bowel. Let me know if you have any questions about the hysterectomy x

[Duckybun in reply to Mandy79]

Hi mandy, I’m just in the door from work and don’t have time to write properly but just wanted to say thank you for your reply. It’d be great to chat a bit. I’m worried I’ve already left it too late as I have so much hip and back pain I think it’s in my sacroiliac ligaments already. But we’ll see.

Hope you’re not feeling too bruised and battered!

X

[LED76]

Hi Duckybun. I’m new to the site but not to endometriosis My history sounds very similar to you - I’ve had two laps for removal of stage 4 endo, chocolate cysts, detaching my bowel and uterus etc. It was discovered when we were investigating fertility issues. We then underwent ivf and were very lucky to have twin girls (also used immune therapy). My girls are now nearly 5 and things feel awful again, gradually getting to that point. I’ve recently seen the same consultant who has confirmed endo has returned (different areas) also that I have adenomyosis and a large fibroid. I also have endo in my c section scar! His advice is total hysterectomy given the different things going on and my history. I’m 41. I sort of guessed it would be this advice but not sure I’m ready for this but also not sure why not! He has said he can do this via laparoscopic surgery which helps massively with recovery. I’d be really interested in where you have got to with your gp/consultant conversations and you thought process. All I feel I hear is friends saying surely I could manage this more ‘naturally’ but I can’t see how. Thanks. L.

[Duckybun in reply to LED76]

Hi LED,

Sounds like we do have a lot in common!! I’ve twins too and they’re one of the main reasons I want to pursue more treatment. They deserve so much more than I can give them at the minute.

I’ve my consultation on Wednesday, thank god for private insurance.

I know what you mean about wanting the op but not wanting it, but I’ve just got to the end of my ability to cope and want this resolved. The thought of a full hysterectomy terrifies me but I really don’t want to suffer constant ups and downs.... which honestly are more downs at the minute. I woke up this morning after three days of bleeding and feel like myself for the first time in 2 weeks and I don’t know how many days I’ll get this cycle before it sucks me back down and that’s just a shit way to live, especially with two little people who look to me for consistency and unconditional love and patience.

[Duckybun]

Just to update. I had a consultation on Wednesday with the surgeon who did my last lap 5 yrs ago. He was surprised to see me and said I shouldn’t be in any pain because the last excision was so radical..... then he did an internal scan. So I have extensive disease again, huge endometrioma on the left ovary, bowels all fused, uterus is bent over and stuck to itself, now have a diagnosis of adenomyosis ontop of it all. So he’s recommended a total hysterectomy and trying to get a date for next month but needs a bowel specialist on surgery with him.

My main worry now is hrt and whether or not any type of eostrogen will continue to trigger the disease.

Don’t even know wher to start looking for information

[LED76 in reply to Duckybun]

Hi Duckybun, it would be good to stay in touch. Diagnosis very similar again. I’ve opted to schedule my surgery for October though to give myself time to adjust. As well as the total hysterectomy and endo removal, also need to open my Caesarian scar to remove the endo growing in my abdominal wall and scar. I’m nervous about the hrt too. I’ve been told the estrogen is better for me and no progesterone. No guarantees but I’m hoping quality of life improves long term this time. Hope all goes well with you.