Endometriosis UK
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New diagnosis

Hi everyone I'm new here..Just had 1st lap for suspected endometriosis last week and now told I have severe endometriosis involving ovaries, tubes and bowel. Adhesions everywhere. Have been advised to start decapeptyl injections to try to shrink back the endo. My symptoms are largely bowel related and only during my period. Surgery to free my bowel was mentioned but I'm hoping the Gnrh injections and also the fact I'm nearing a natural menopause (i'm 48) might mean I can avoid that. Since my surgery and diagnosis I have been tearful and worried I will be even more emotional once I started the injections. I can't believe I have gone along for years with symptoms and told myself they are normal period pains. I had 2 children in my late 20s but I think the pain and symptoms started after I had them. I am upset with myself. Does anyone else have experience similar to mine. Will it be possible to avoid bowel surgery? Is it normal to feel tired with endo? I will appreciate hearing from anyone with any advice or experience. Thank you!

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Hi Wildgoose1

So sorry to hear what you're going through...and it's completely normal to feel so upset.

My experience is very similar to yours. I too suffered for years (I'm 49 now) thinking I had 'normal' period pains. I'm also annoyed that I didn't push for treatment years ago, although to be fair when I first went to see my GP back in 2002 complaining of a stitch-like pain in my lower right abdomen I was dismissed with advice to drink mint tea because I probably had wind....When I went back a couple of years later and saw someone else because I had terrible constipation and bloating I was just told to drink Fibrogel and eat more fibre. Fast forward to 2013 and I ended up in excruciating pain every month going to the toilet...bleeding and mucus from rectum, horrible bloating and wind, etc., etc. To begin with I was told by my GP I must have bowel cancer and was referred to a bowel specialist who messed me around for 2 years and finally came up the diagnosis that I had constipation and recommended I eat no fibre at all but take a laxative every day for the rest of my life.....

Having googled my symptoms I finally went back to my GP last year and told her I was convinced I had endometriosis. After another year of being messed about by the gynae who specialises in treating endometriosis and works in my local hospital which is a BSGE accredited Endo Centre, I finally had a diagnostic laparoscopy in September this year....endo everywhere, like you...3cm rectovaginal nodule in 'obliterated' Pouch of Douglas, 'obliterated' uterosacral ligaments, ovaries stuck to ovarian fossae, 'bulky' uterus which is 'adenomyotic' in appearance. All of this was a horrible, horrible shock and to date no-one has bothered to contact me to attempt to explain what any of it means or what the implications are. I received a letter telling me that my follow-up appointment with the gynae who performed the laparoscopy wouldn't be until March next year - 6 months after the laparoscopy and 6 months after being told I had all these terrible problems!!! And this is an Endo Centre!!!!

After the surgery, which was an absolutely horrendous experience, I swore that I wouldn't ever put myself though surgery again, but since then I've had the worst periods I've ever had before in my life with the worst pain I've ever had to endure (can't even begin to describe how bad it's been). I've also been constantly tired and just don't want to do anything. Like you, I've also been incredibly upset, one minute in tears, the next raging about how badly I've been treated.

From all the reading and research I've done and after 'speaking' to other women on this forum, I know now that leaving endo on the bowel really isn't an option. Nodules can perforate the bowel and may do permanent damage.

I had an MRI on October and was told last week that scarring on the bowel was found and that I'll need to have another sigmoidoscopy to see how badly the bowel has been damaged. This scarring may never go away and may lead to more bowel problems further on down the line.

I've also read that both natural and drug-induced menopause doesn't necessarily alleviate bowel-related symptoms. I've also read that over time even if the adhesions start to shrink, they can pull on organs, causing further pain. If you do decide to go for surgery further on down the line, I've also read that adhesions can calcify as you get older and will be more difficult for a surgeon to remove.

So, all things considered, I'm now convinced that the only way forward is surgery to remove all the endometriosis in my case at least...I just wish I still wasn't being kept waiting so long for further treatment, feeling completely ignored by the medics. After having put up with these miserable and debilitating conditions for so many years, it feels like another kick in the teeth.

I can't advise you on what you should do in your case, but please do read up on the condition as much as you can...unfortunately because there's still so much ignorance amongst the medical profession about endometriosis and adenomyosis, we really need to do as much research as we can ourselves.

I've been reading Tamer Seckin's book, 'The Doctor will see you now'....it's very informative. I've also been reading up on changing diet and lifestyle...basically cutting out ingredients that are inflammatory and oestrogenic and trying to eat as much healthy stuff as possible. I've also been taking supplements, including using progesterone cream which doesn't have the nasty side-effects associated with other hormone treatments (not that I've been offered any, but anyway)... and trying to avoid stress and getting enough exercise and going to a yoga class once a week...I'm not sure if any of it will help, but it at least makes me feel like I've got at least a little bit of control over my health and I know I'm doing my best to do as much as I can while all the medics are twiddling their thumbs in the meantime.

Wishing you all the best...I do hope that whatever you decide to do and whatever kind of treatment you decide to have, it will be the right choice for you and will lead to a much better quality of life.

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Have you tried getting in touch with your Endo centre to ask for an earlier appointment Jeemm? 6 months seems a long time to wait after your surgery?

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Hi there!

Thanks so much for your reply...yes, I agree with you, a 6-month wait after being given such an awful diagnosis is far too long!

I did contact the secretary of my consultant and she said they were 'inundated' with patients at the moment and unfortunately a 6-month follow-up appointment wasn't unusual.

Because I wasn't at all happy with the consultant anyway I asked my GP if I could have my care transferred to the lead consultant of the Endo Centre, so in fact my next appointment has been brought forward to 2nd January...4 months after the laparoscopy. I'm only going to be seen sooner because I'll be treated as a 'new patient'...if you're an 'old' patient who's been diagnosed with severe endometriosis and adenomyosis who's already been waiting YEARS to be treated, you're pushed to the back of the queue...how crazy is that???

In the meantime I'm still waiting on a proper report of my MRI scan which took place on 20th October. Initially I was told I'd receive a report 2 weeks later, but after numerous phone calls and eventually contacting PALS (patient advice and liaison service) I was told that last week (6 weeks after lap) the relevant colo-rectal team were meeting to discuss my case.

As you can tell, I'm pretty much at the end of my tether really...I was thinking of going private but I don't know who to see and am just feeling so confused, anxious and upset....

Anyway, as I said, thanks so much for your sympathy....it's really great to have that support!

Hope you're okay yourself.

Sending all best wishes.

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Thank you for replying to me jjeemm. It feels supportive to hear from someone with a similar experience. I am seeing my gynaecologist who did the lap last week to discuss all options going forward. I think I have to try the decapeptyl for 4 months then review. I think I am still in shock from thinking I just had wind to being told post op last week I have a frozen pelvis! I am reading everything I can find about the condition now and will have a look at endometriosis diet. Thank you again for sharing your experience with me.x

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Hi Wildgoose1!

Yes, it's really great that websites like this have been set up...it makes you feel so much less isolated!

I'm so sorry you've ended up with a frozen pelvis....truly dreadful and you must be in an awful lot of pain....yes it comes as a terrible shock to be told you've got such a severe disease...and it takes a very long time to process.

In my case I've thought of practically nothing else since I was given my discharge letter in September detailing the extent of my condition. My first reaction was to burst into tears, not only because everything sounded so bad, but also because of the horribly impersonal nature of the letter....it wasn't even written properly in full sentences...just full of medical jargon, abbreviations and acronyms that I didn't even understand! I was on the internet for ages just trying to figure out what 'obliterated US ligaments', 'bulky uterus, adenomyotic in appearance', 'obliterated POD' actually meant!!! I was truly shocked....no-one had ever indicated at all that my condition might be serious.

Since then the lack of care from the medics has been truly unbelievable. When I went to see my GP after the lap (in a terrible state) and asked if I should have hormone treatment, she said she didn't know anything about progesterone-only pills...I wondered if I should try Provera...she literally had to look everything up in a book!!! Her lack of compassion and concern again meant that when I got back home I was in tears!!

In fact the only person so far who's shown any kind of concern of sympathy has been the consultant's secretary...no-one ever once told me that there was a specialist nurse I could contact, or a pain-management expert at the hospital...I feel I've just literally been left to rot....

I do hope you can see the gynae who operated on you very soon to discuss everything going forward.....and I really do hope the decapeptyl helps...yes, taking it for an initial term of 4 months before a review sounds like a sensible idea.

In terms of diet I'm avoiding coffee (supposed to be oestrogenic) - I have one cup of green tea every morning instead and the rest of the day I have herbal teas...raspberry leaf is quite nice and very good for your uterus, apparently...I bought it from the internet. I'm also avoiding all dairy produce and replacing it with almond and coconut milk, coconut oil and nut butters instead of butter and eating coconut yogurt instead of dairy yogurt. I'm also avoiding all wheat products and trying out gluten-free recipes for bread - with varying degrees of success! You can buy gluten-free breads from supermarkets these days too. I'm also cutting out sugar as much as possible. If I do make a pudding which requires sugar, I'm using small quantities of maple syrup, date nectar and honey. I've also just bought some SugaVida (palmyra sugar) which is very expensive (in fact all the healthy stuff is!!!), but tastes very nice and is not supposed to be inflammatory. I'm also using only organic cold-pressed oils, olive oil, coconut oil and hemp seed oil. And finally I'm not drinking any alcohol at all or eating any soy products because they're oestrogenic, apparently. I'm eating oily fish, loads of fresh veg, nuts, seeds, etc. and quite honestly I do feel better for it.

Please do message me for any further advice about reading material or recipes!!

Hang on in there and try and look after yourself as best you can...

Sending a big hug, X

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hi mcdonnelljane,

Thank you for sharing your story with me and for the diet tips!! I too burst into tears on the ward following my laparoscopy last week. I thought at most I would have mild endo that could have been removed. I feel so stupid that I did not seek help sooner as I had convinced myself that the pain and bloating during my period was normal and put up with it for many years. I am just hoping that I can avoid further surgery. I can't even believe that I am about to start something like decapaptyl this week. It feels so radical. I suppose it will take time for the shock I feel to sink in. Thanks again x

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I know just how you feel...it's such an awful shock, especially in your case given that you have pretty much the most severe type of endometriosis there is....really, really sorry you've been given such awful news. I also thought in my case I'd be told I had it on the bowel and it would be removed asap. I had absolutely no idea I had it on the ovaries and in addition have adenomyosis too. I'd never even heard the word before and when I starting reading up on it, it seems that the only way to get rid of it is by having a hysterectomy!!!

Please don't blame yourself for putting up with pain and bloating...you honestly weren't to know. Hardly anyone I know has even heard of the terms endometriosis and adenomyosis, including doctors, apparently. We've been brought up to expect that pain comes with periods...too bad if you're suffering, 'aren't we all, dear...I'm afraid you just have to get on with it'.

Yes, it does take time for the shock to sink in. I do hope you've got some supportive people around you. My poor partner has had to bear the brunt of all my rants and emotional outbursts, but hey, that's what he's there for!!!!

I completely understand that you don't want any further surgery, but if it will help, it might be worth considering...but at the end of the day, only you know what's best for you....if you're not happy about any of the treatment offered, don't be pushed into having it....there's usually an alternative.

Sending big hugs...try and stay strong, X

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That's so lovely of you : ) Are you on any treatment currently or have surgery planned?x

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Hi Wildgoose1

No problem at all! Us endo sufferers have to stick together and support one another!!!

No, no treatment in my case....I was never offered any hormone medication apart from once when I saw a very strange random doctor at the hospital who suggested I go to a sexual health clinic and have a Mirena coil fitted. All she did was say that it had numerous side-effects and didn't really suit many women. I asked her if she would recommend it in my case, but she kept on saying that it was up to me!!! I came away thinking I'd just totally wasted my time!

When I realised after the lap how severe the endo was, I went to see my GP to ask for a prescription for Provera, but again, after reading up on all the side-effects and risks, I decided against it. So now, basically I'm treating myself with the bio-identical progesterone cream which I use on days 14-21 of my cycle and I'm also taking some supplements recommended by Lara Briden, the author of 'The Period Repair Manual'. I'm also taking Serrapeptase tablets from Holland and Barratt because so many people recommend it...it's supposed to get rid of dead cells and is a natural anti-inflammatory...to be honest it was the only thing that seemed to help with my incredibly bloated belly after the lap. Other things I'm taking are turmeric with black pepper pills (Tamer Seckin recommends taking turmeric and cumin in his book), magnesium supplements, fish oil tablets, DIM (diindolylmethane) with Calcium D Glucarate tablets and I take a tea with Triphala powder last thing at night to help cleanse my colon (tastes horrible!)...oh, and I'm drinking lots of filtered water...altogether it's meant that I hardly get constipation any more. As I said, I'm not entirely sure if any of these things are doing anything to get rid of the endometriosis and adenomyosis (won't really know until I'm opened up again I suppose!) but anything's worth a shot! It does help me to feel that at least I'm doing something positive, and it's been quite therapeutic just trying things out.

I'm supposed to be having another sigmoidoscopy this week, but I'm waiting to hear back about this because the last one I had (2014) couldn't be properly put in because it was too painful!

I'm supposed to be having further surgery to remove the endometriosis, particularly from the bowel...I was told that the whole of the back of my cervix is attached to my sigmoid colon and there's also the recto-vaginal nodule to get rid of...but when exactly the surgery will be performed, I have no idea...going by how long it's taken me to get this far, I'm not holding my breath that it will be any time soon!!!!

Oh well....just wish I didn't feel quite so powerless and left on the scrap-heap!!! Nobody wants to be cut open...having surgery is never an easy option, but if it's the only thing to get rid of this terrible disease, then it needs to be performed for those that need it asap!!!

Anyway, really hoping your decapeptyl injections will lessen your pain and will be really effective for you....not everyone has horrible side-effects...so hopefully it can't hurt to give the injections a go...if you really hate them, then you can always stop and try something else.

In the meantime, try and be good to yourself...lots of rest and relaxation...and try to eat as healthily as you can.

Sending all positive vibes to you :) X

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