Whos had Multiple Surgeries.

[Heloo85]

I had my surgery now 14 months ago. I had stage 4, both ovaries, fallopians, bowel and bladder. I am still very much under BSGE on 4 monthly follow-ups. Ive since tried everything again for the second time and currently waiting to start my 3rd course of Zoladex. Lucky me! My End returned within weeks of surgery. I have a very active, very aggressive form of the disease. Im in agony constantly. I suffer terrible fatigue. Pain. Bowel problems. Bladder problems. The works. I subsequently get PIP.

I've never been offered a hysterectomy although i dont want one. I have no children and dont plan on any. Zoladex does help slightly but my disease is still active even without menstration. Hence no hysterectomy. My surgeon, although a consultant in his field is reluctant to re-operate. He has more or less said. But as also mentioned not wanting to rush me back into theatre anytime soon?

So. Im asking. Whos had multiple surgeries? What was the pros and cons of multiple surgeries? Will i get more surgery? Should i want more surgery?

Im currently thinking through my options as i canrlt cope trying treatment after treatment that does not work or has severe side effects. This disease is killing me!

[Tia1991]

Hi there all in all i've had 5 surgeries for endo i was on the zoladex / prostap injection for 11 months my last injection has recently ran out so in constant agony all day everyday now on morphine all day isnt good but gets me through the day for a 26 yo that feels like a 90 yo most days its a real downer. The injections did help me abit for about 2-3 weeks out of every month. But just like you it is killing me im not under a bsge specialist. My gynea at spire hospital said that if the injections dont help he will look at a hysterectomy as there is no other option after the injections. I dont want children and never have so for me im not really bothered about it. Hope you get help and sorted very soon i know how horrible it is. Take care & big hugs.

Tia xxx

[Heloo85 in reply to Tia1991]

Thanks for your reply. You have certainly been through the mill too! Did surgery help at all? How long between surgeries? Did you have excision or lazer? How do you feel about hysterectomy? I know i dont want children but if surgical menopause is as bad as chemical, im certainly not interested!

At the min i feel very unclear on where my treatment is headed. Ive been under BSGE now a total of around 2 years. They messed me about at first then decided to do intermediate surgery. Which turned into major surgery at the time of surgery. Since then ive had 4 monthly follow-ups. Even though my endo is back hes very reluctant to take me back into surgery. And keeps trying the same hormonal treatments my endo doesnt respond too. But then, if surgery didnt work first time, will it ever. But i certainly feel you. Im 32 going on 90 too and its certainly no fun. I hope things work out for you xx

[Tia1991]

The surgery gave me around 2 months pain free before it started gradually taking its toll on me. Ive had lazer and excision together ive had 4 key hole surgeries and a bikini cut surgery. to be totally honest ive had a few worrying thoughts through my head about hysterectomy but i think it will be my best bet. I dont really know what to expect through the menopause but whatever it entails im 95% sure it will be better than suffering all day everyday with this . I cant cope with this anymore im constantly depressed and even good days are still bad. If i didnt have my husband by my side i seriously think that i wouldnt be here today its ruining my life. he understands about the sex and all the ins and outs of it (well as much as can be expected for anyone who hasnt got endo themselves) none of it bothers him and he tells me to stop worrying about the bedroom and other simple things around the house that he has to do for me but as you probably know its not as easy as that. xx

[shazlovesevo in reply to Tia1991]

I'm so sorry to hear you're having a tough time hun, sending big hugs yo both of You!!!

Also Tia, if the injections aren't working then a hysterectomy won't help your pain so don't be fooled by that please. Try to get under a BSGE if possible x

[Tia1991 in reply to shazlovesevo]

Thanks hun. How wont the hysterectomy work? X A different gynea did say to go to a bsge specialist but im not normally under him so iam waiting to see my usual gynea to see what he advises. what can the bsge do for me that my gynea cant? xx

[Heloo85 in reply to Tia1991]

A hyster unfortunately isnt a cure. Its very rare, but certain endos, especially the aggressive kind like mine and sounds like yours, produces its own estrogen to feed itself. Hence why i wont have an hyster and why my gynea wont even suggest one. Unfortunately a BSGE clinic isnt no cure either. As said, ive been under a specialist now for 2 years and hes as useful as a chocolate fireguard! Some endo is easily treated, but some like ours is defiant! It isnt Drs fault, but it would be good to have treatment options that work. Also, another thing to consider is that its not necessarily the endo causing pain, but the damage endo has done. All my organs have been permanently damaged! Then add adhesions on to top of that. Its depressing but i know how youre felling. Im having some depressing thoughts myself recently and wondering how much more i can take xx

[JOSANDY40 in reply to Heloo85]

My Thanus gland in my brain is also a possible source of estrogen!

[luthien in reply to JOSANDY40]

Thymus gland, in the base of your neck? It doesn't / can't produce oestrogen. The pituitary gland (in your brain) produces LH and responds to oestrogen. Thyroid problems do affect oestrogen, but that's in your throat.

[Heloo85 in reply to JOSANDY40]

Estrogen: Not just produced by the ovaries. ... Most estrogens, such as estradiol, a primary hormone that controls the menstrual cycle, are produced in the ovaries. Estradiol circulates throughout the body, including the brain and pituitary gland, and influences reproduction, body weight, and learning and memory.

Low estrogen has been linked to alzymers .. It effects brain, bone, heart. To stop estrogen in its tracks long term can have very dire consequences. Very! So its my personal belief that i wont try no poison that stops my cells uptaking estrogen. And you mean thyroid. No. Pituatury gland. Brain. I was rushing to work. Thats how men also have estrogen without ovaries xx

[Heloo85 in reply to Tia1991]

Also a hyster comes with its own set of problems like increased risk of heart disease, certain cancers from hrt and oesteoprosis. Not to mention depression, mood swings, insomnia, night sweats, hot flushes, weight gain/loss. At the very least youre swapping one set of problems for another and it might not cure you.

Ive gotta say my consultant was spot on. 5 mins before theatre i was told that it was unlikely to cure me. He was right. But it doesnt leave me any the less fed up with everything! A hyster is a big decision that needs serious thought and research. Xx

[Tia1991 in reply to Heloo85]

My mum had hysterectomy 15 years ago and they gave her the option then of taking a tablet which could make her at risk of breast cancer or not take it and be at risk of getting osteoporosis later in life she ended up getting osteoporosis 2 years later and i see her suffering now with the problems with her back but shes still going strong and has a job which is more than me at the moment i personally dont see any other option myself when my mum at the age of 62 is more mobile than me she does more for me than i do for her at her age it should be her children looking after her and running round for her. But that is impossible for me. xx

[Tia1991]

Ok i understand that what your saying. But going in surgery taking endo away and same time hysterectomy then if its been taken away it wont able to produce the estrogen then surgical menopause dont know how long later then that will help then wont it? I was watching Victoria derbyshire on bbc news the other day and women with severe endo have had hysterectomy and all feeling well with no pain or very little pain. I dont know im not a doctor just going of what ive seen and heard of other people that have suffered the same and maybe worse than me. Like i said im desperate ive suffered with this for 11 years now and really cant cope with it anymore im willing to try anything something out there must work not necessarily cure but help pain wise. My husband is 21yr older than me and he has 2 children from a previous relationship and had the snip (vasectomy) and ive never wanted kids im not a maternal person. Take care xx

[JOSANDY40 in reply to Tia1991]

If your Endo has set up independent areas in your body then it does not require your ovaries to continue. I took Zoladex 10 yrs solid! It halved the symptoms. Now I take morphine, Codiadramol, Ponstan 40, Preblegan, Belladona. Since Christmas I have had dragging, nausea, bladder and bowel emptying issues, throbbing with huge lumps on my bottom. Kidney infection, bladder infection and antibiotics haven't helped. Tomorrow I start going for a string of test. I wondered if I have cancer as Endo gives you a increased chance. Best wishes Joy

[fancydressgirl in reply to Tia1991]

Hiya, hysterectomy will only remove endo on the womb & ovaries. If endo is on bowels, bladder etc a hysterectomy will not help. Please find the book Dr. Redwine has written on amazon. It is a complicated disease even for the experts to treat. Please continure to find out more about it and not just listen to a handful of women on TV or radio. I wish you good luck with your continued treatment. X

[JOSANDY40]

I am the same as you. But they refused surgery now cos my interior is so bedded down and removal of bladder, bowel. I was told this will increase pain and will need a bag. I have scarring on my lungs as in my thirties my lungs would bleed, breathing problems with stays in hospital. I was on Zoladex for 10 yrs. I live alone with pain constantly it can be frightening. I can know longer take Zoladex as I got inflammation of the brain. I have gone through the menopause and it hasn't made any difference. I am unable to work. Yes you are probably right about killing you. I was to told Endo won't kill you but it's causes , organ failure will!

[Heloo85 in reply to JOSANDY40]

Jeez. You too have been through it! People dont understand the severity of the disease because people are just told its "painful periods". Id love to just have painful periods. Im sorry yours as effected your lungs! There definitely needs to be more research done, as people with severe disease have little to no treatment options! Xx

[JOSANDY40 in reply to Heloo85]

Can you think why or how you got your Endo? Did you chew rubber pencils, or wash cups in bleach or not wash veg or something else? Drank regularly from polystyrene cups? Me I think it as because I swam in a stream by a experimental Farm with Pesticides. I think if would be helpful to sufferers if we could look at exposure as a data base!

[Heloo85 in reply to JOSANDY40]

I know exactly why i got endo. Its a genetic veriation from a cancer gene passed down from my fathers side! Add stress on top of that and probably poor diet and you have a recipe for a disaster! And if you care to google, you too will learn that in severe endo cancer genes are found! But treatment options, im fully aware of whats available and whats the side effect. The reason i asked about multiple surgeries is because i was weighing up my options on whether or not there was any point, seeing as my first failed miserably! Duh.

[Penelopeel]

You can get a neuropathic pain from multiple surgery so I wouldn’t do that. They are using drugs called Aromatase inhibitors for endometriosis with good results. It is still experimental but google it and ask your doctor as a last resort. They are used in breast cancer patients. In Australia a place called the Wellend centre in Adelaide is using it for endometriosis they combine it with another drug called a “ selective androgen receptor blocker” sonyou get no side effects . So google AROMATASE inhibitors for endometriosis . That might help if they will give it tonyou.

[Heloo85 in reply to Penelopeel]

I was supposed to be put on that but my consultant changed his mind. He was then going to put me back on the pill back to back even though that just caused months long bleeding last time. So hes settled with Zoladex again, even though ive specifically told him i cant stand the side effects. None of the treatments suit me. As i have joint disease and even armotase inhibitors cause bone loss! It does have very similar side effect as Zoladex too. It is only ment really for post menopausal women with breast cancer! And again, if it works, it only suppresses the disease, once treatment is stopped, it returns!

I guess my consultant made a huge U-turn on that one. Probably because i have heart problems. 😂

I have no idea what my consultant is thinking. I start Zoladex this week again and see him again in just under 3 months. I think he thinks im staying on Zoladex long term? I aint. The drug has a risk of sudden death, especially in those with heart issues. Im thinking of just throwing towel in and saying look, nothing works, im stopping the poison? Xx

[Penelopeel in reply to Heloo85]

I understand what you are saying! Just manage the pain!! Endometriosis is like a cancer that doesn’t kill you. In Adelaide they are using the aromatase inhibitor combined with something called Enosobarm which is a selective androgen receptor modulator! That extra pill takes all the side effects of the aromatase inhibitor away. It protects the bone. They are mainly using it in premenopausal women to prevent breast cancer in women who have high breast density and thus breast cancer risk. But they are finding it works well in The endometriosis patient’s TOO. It is very new and won’t be available probably in the uk but it is coming I am sure to help endometriosis sufferers and I would mention it to your doctor who may be able to find out more. . Anyway it’s hope for the future. But no the only cure is menopause. Before that it is just managing it. I’m lucky as mine responds to progesterone. Surgery can aggravate the pain as the nerves start firing by themselves. So I would not keep having lots of operations. Sometimes they use pain meds Like Pregabalin to help with nerve pain which can be part of it. I feel for you as there is pain and there is that terrible tiredness . But don’t give up as I feel sure treatments will improve .

[Penelopeel in reply to Heloo85]

Me again. I posted here about aromatase inhibotors a few days ago . I found a great review article on endometriosis. Org ... anyway they suggest combining the AI WITH thenpill or progesterone to stop the side effects . So why can’t you ask your consultant for that??? It seems to work really well.

[Heloo85 in reply to Penelopeel]

Its not licenced in UK for anything other than breast cancer in post menopausal women. It does have side effects, worse than Zoladex. Zoladex shuts down your ovaries, but your fat and part of your brain still produces estrogen (why post menopausal women get breast cancer). Armotase Inhibitors stops every cell in your body uptaking estrogen, starving not only endo, but every cell in the human body that needs estrogen. Hence why it works so well! A 6 months course of armotase inhibitors reduces bone density by quite a lot, compared to Zoladex. My consultant was going to put me on it but i did my own independent research and thanks but no thanks. All treatments have risk to benefit ratio. The risks far outweigh the benefits in my opinion .. The better option would be a hysterectomy and pray for best! Xx

[Penelopeel in reply to Heloo85]

I know it’s not licences yet for endo. It isn’t in Australia either. It’s off label use. Please look again at the AROMATASE inhibitors. They combine them with the pill or progesterone in young women and there is no bone loss and the quality of life improves. They don’t use the aromatase inhibitor alone. In breast cancer they can’t use the pill for the side effects. They are not scary drugs. They reduce your risk of breast cancer too!! When you research them look at how they are used for endometriosis not breast cancer . Because in endo they can add back some oestrogen and so much less side effects. Look at some of the research on endo .

[Starry in reply to Penelopeel]

I think heloo has made some valid points that aromatase has lots of drawbacks similar to Gnrh agonists as it works in a similar way, if through a different more powerful mechism.

It's dangerous to read too much into research papers too soon as some studies are more robust than others, or to assume that something that works for one will work for all. With its projected side effects profile it is far from a miracle cure. Though it may help some sufferers, there are lots of types of endo, some resistant to hormone meds, there is no evidence on long term safety, and lots of people would not be able to tolerate it.

[Heloo85 in reply to Starry]

Thanks. Thats the point im making. Theres very little research done with endo, but plenty done for breast cancer. I try treatments. Currently on my third course of Zoladex! Is it a cure? No. Hence why its my third course. Does it help? I didnt think it did while i was last on it, as i still had endo/endo damage symptoms as well as severe side effects such as worsening depression, memory loss, acne, mood swings, painful joints, hot flushes, insomnia. Why am i back on it? Because since coming off it, i have realised those are the lesser evil! Will armotase help? Who knows. Alls i know is armotase is a hell of a lot stronger than Zoladex. A lot. I have bone/joint issues. I will likely need my right ankle pinned sometime soon at 32 because its collapsing under me. Do i want to risk further joint problems in the future? No i dont. Not to mention, can i have it with heart disease? Im risking it with Zoladex. Is it a decision to take lightly? Not at all. A full hysterectomy would be a safer option for me if i had to chose, and that doesnt come risk free either! Xx

[Heloo85 in reply to Starry]

Also people seem to forget, its not always endo itself that causes pain. Its not with me. My pain is everyday. Not a few days a month on my period when endo is actively bleeding. Even on zoladex, im no better. My bowels obstruct, my bladder still plays up, my pain still goes down my legs, into my back. Why? Because endo run amock for over a decade permanently damaging my organs. That is why i get PIP. That is why im under a specialist and will remain under one. Stopping endo in its tracks may stop any further damage being done, but even major complex surgery couldnt fix the damage it had already done xx

[Heloo85 in reply to Starry]

ncbi.nlm.nih.gov/pmc/articl...

Plenty of information online. If you read that people on here will see aromatase inhibitors are potentially life threatening. Drs wont tell you everything while trying to fob you off with powerful drugs. Ive nothing against Drs at all, and they too struggle. If its advanced cancer and life threatening, then yes, by all means, its worth the risk, youre dying anyway! To treat endo? Not sure. I might be in pain but i also know that sometimes, well nearly all my time, that drugs and/or surgery can make the situation worse, not better xx

[Rachie9]

I don't understand why they think a hysterectomy will be the answer as endo is found outside the area it would normally be found...so by removing the reproductive system isn't going to stop the pain in the endo on bowel, lungs etc...?

[Heloo85 in reply to Rachie9]

No. A hysterectomy isnt a cure. With the added side effects i wouldnt have one anyway. Although some days out of desperation i do feel like telling my consultant to cut everything away. Even though i know it wont work. I guess we live in some vein hope of it curing us? But i wouldnt have a hyster even if my consultant suggested it! Xx

[luthien in reply to Rachie9]

I guess for the same reason they think the pill will be a cure; it's either you're young go on the pill, you don't want children have a hysterectomy. Specialists shouldn't suggest either, I have a book that's about endo and tells you how to choose a specialist and one thing it mentions is if a specialist suggests hormones or removal of uterus before investigation then you need to choose another specialist as those aren't fixes.

[Starry in reply to Rachie9]

I sometimes wonder if it isn't because a subset of endo sufferers also have undiagnosed adeno and have endo not sufficiently advanced to be manufacturing its own oestrogen they would find their symptoms lessened if the oopherectomy menopausal side effects did not hit them too hard. But it is a massive irreversible gamble. I would not do it personally. The more I study endo and my subsequent complications the more I realise how little science knows about the body as a system.

[Heloo85 in reply to Starry]

Mine doesnt respond at all to hormone treatment. My endo is well and truly active on all hormonal treatment. It does 'help' slightly. The zoladex that is. Both progesterone and combined pill are big no, nos. Its as if my body fights them. Progesterone left me hospitalized and the combined back to back left me crippled. Which is bizarre because i was on the pill from an early age with no problems up until it caused a cervical errosion in my early 20s. But its like my body cannot tolerate it now. I get severe menopause symptoms on Zoladex. I honestly wouldnt dare try Aramotase. This 'no side effects' is rubbish. The least im getting are Zoladex symptoms with the added bonus of bone loss. My joints are bad now, im trying to get to pension age without being a full blown cripple as it is! No, i wouldnt have a hysterectomy. But i am stuck between a rock and hard place. Even my consultant doesnt know what else to try. Mine aint going anywhere any time soon. Mine has actually grown its own blood supply let alone produces its own oestrogen! Xx

[Starry in reply to Heloo85]

Hugs xxxx

Mine was hormone resistant too. I had very severe adverse cognitive side effects on zoladex and couldn't tolerate the mirena. I really feel for you.

There are just so few treatment options aren't there, and the root cause so poorly understood.

I suppose the main drawbacks of multiple surgery is the cumulative risk of surgical adhesions and nerve pain along with the risk surgery itself and the body's challenge to recover afterwards.

My surgery protected my bowel but I've been left with coxxodynia, limb nerve pain along with severe cfs, joint pains (maybe fibromyalgia), esophagitis, weight loss and food intolerances and thankfully asymptomatic hydrosalpinx after just my second surgery. Personally I would hesitate and think long and hard about further surgery as my body didn't handle it well. Bladder aside, 8 months on I'm certainly not in a better state health and wellness wise than before the op and am still struggling to get back to work.

I suppose it ends up being a very individual balance of whether you can cope with symptoms how well you handle surgery and whether there is risk to organs.

[Heloo85 in reply to Starry]

I completely agree with you. There really isnt any valid decent treatment options. I too was left much worse after surgery. All i know is endo is back and thats probably the cause! I had 10 'impactions' in a matter of months. My pain is much worse. My bladder is ridiculous. My flow is dribble. If i have to hold a wee for a short time the pain is so bad i sweat from every pore.

Zoladex certainly effects the brain. Depression, memory loss, lowers concentration levels. Can you imagine aromatase, that stops EVERY cell uptaking oestrogen. No thanks.

Seems very much like youre stuck between a rock and a hard place too. Its a constant battle of side effects and disease.

Really want to beat it and become healthy but I dont think its possible. Xx

[Starry in reply to Heloo85]

That really is a nightmare xx I so feel for you with the bladder issue that was the pits for me and the symptom that finally drove me to the doctor and my diagnosis xxxx

Yes it's like the surgery set off a domino snowball effect with my entire system going down. The last 8 months has been a crazy "whack a mole" exercise of trying to get one crazy disruptive symptomunder control without setting off another to reach some form of stability.

I ditched hormones for the reasons you mention and am just praying the cfs isn't a sign of a gradual return. I think my endo must have been a slow growing type to get to age 43 undiscovered, but then I took the CP through my twentries and early thirties and it seemed to take hold when I stopped. I've been praying I make it to a hopefully early menopause but have now read that that doesn't stop it either!

For the time being I'm out of the maelstrom now and trying to tackle the residual issues but even that is a lot to deal with.

The professionals are telling me this is it now, chronic condition etcetc and I just have to accept it and adjust, but that is so hard to do given how much I can't do any more. If it were just pain I could handle it, but the fatigue and the food problems just wreck every aspect of my work and social life.

Really hope you are able to strike a balance that is livable for you xxx

[Tink14]

Hi, I've had 7 laparoscopies, 4 with treatment. Burst appendix and a full abdominal hysterectomy 2 years ago. The hysterectomy didn't work for me so I still have all the same pain with the added menopause thrown in as well. After 25 years there is still no end in sight

Tink x

[Heloo85 in reply to Tink14]

Big hugs .. Youve certainly been through the mill. Its a very difficult disease. Xx

[Tia1991]

Hi everybody i guess im just been naive but im really desperate. And everybody is different there is some woman thats had it and are alot better and some that are worse off by having it. I have thought about it pros and cons for around 3 years now. Xx

[liru]

I feel the same as most of you. Pain is disabling. Do any of you have got a disability due to this disease? Symptoms are so painful that makes working hard. But I need income so I have keep working.

[Heloo85 in reply to liru]

I get PIP. Only lower rate care but its an extra £220 a month and leaves me able to claim disability tax credits which gives an extra 3k a year plus normal working tax credits and reduced hours (16 instead of 24). You need to fill in the forms based on your worst day. Its achievable. I got it solely based on my medical records. My GP and condultant backed my claim.

Nothing ventured, nothing gained so get applied. I do work, only part time. I wish i was well enough to do full time, as im 32, no kids, and want to get somewhere in life! But this blasted disease prevents that. Good luck xx

[Skyboots]

Hi there I’ve had multiple surgeries last one was 3 years ago I have a feeling that I will need another soon am slightly worried was told I would need a hysterectomy but after reading the post will not be allowing as mine is not in the womb but on my kidneys bowel and back passage just wanted to say thanks as It seems that I am not as well informed as ai thought 😞