MRI

[MalachiteAli]

I have a pelvic MRI this Wednesday. I was shown pics of the endo they found in my abdomen two weeks ago. I'm scared of what they'll find. The doctor has already said he will likely do excision but may need to go for a lap hysterectomy. I'm not convinced surgery is the answer at all.

[Jamaica1234]

Hi the pics you saw of your Endo where they pics from a ultrasound or CT scan

[MalachiteAli in reply to Jamaica1234]

They were from laparoscopic sterilisation surgery

[Jamaica1234 in reply to MalachiteAli]

ok thanks

[Avourneen]

Hi Malachite Ali,

I think it's normal to be scared of what will be found. But I think in reality it is much better to know how bad the situation is rather than just being in pain and leaving it to grow silently. I couldn't get mine looked into properly and recently have and the news is it's basically too bad to help me. If you just leave the endo to grow it will keep growing and you could end up losing a kidney or something dreadful.

What do you think the answer is if it's not surgery? There is no known cure for endo at the moment. Taking hormone medication can mask it and reduce pain but it doesn't stop it growing. I think that surgery can really help if it is done before things get too bad. It's not a miracle cure , if it isn't done well the endo can quickly come back.

If you are certain you don't want surgery then I can't really see why you are even getting the scans etc. No one can force you to have surgery so you don't have to do it if you don't want to. There are thousands of women desperate to get surgery and waiting years for the chance, so those women might view you as lucky to be getting proper investigations and to be being offered treatment.

I would say you are pretty lucky to be being taken seriously by the doctors, lucky to be getting it looked into and very lucky to be being offered the chance to get help. Personally I would take the chance if the endo hasn't got so bad that it's too late to operate.

I realise knowing the state of it is scary, but isn't it better to know the truth? No one can make you have surgery if you don't want it so if that is the case just say no thank you. So you do not need to worry about surgery if you have already decided against it.

Sorry if this sounds a bit harsh , it's just frustrating to hear someone being offered treatment and having their endo taken seriously not seeming to realise that is a good thing. I hope that you find the way that is right for you and that what they find is not too bad. Maybe it won't be bad and you won't even need surgery. Sometimes things aren't as bad as we fear. Good luck.

[MalachiteAli in reply to Avourneen]

Hi. Thanks for your reply. I pushed for proper treatment. I was having terrible pain and trips to a and e, to be told endo was already on my record without me ever having spoken with a Dr about it before. It was found during thermal uterine ablation with laparoscopic sterilisation surgery. The former I had been advised I should have for heavy periods which I was told weren't endo after exams including internal ultrasound, I opted for the latter which resulted in the diagnosis.

I put in a complaint about my treatment and sought help from my Welsh assembly member in pursuing my complaint. I was then given an apology and an appointment with the specialist after I asked for them specifically. I have since learned that the specialist does not have a good reputation amongst women in my area. I am keen to understand the evidence behind surgery's effectiveness.

We are in pain, we are desperate for solutions, but a) we don't fully understand the mechanism of endometriosis growth and b) we don't know how effective surgery is in causing remission of symptoms. My thoughts are that the mechanism of endo growth is due to inflammation which can be caused by a number of factors and that treating this inflammatory response is likely to be more effective than just cutting out endo growth via surgery which has its own risks of accidental injury. Surgeons are going to be keen to be seen to be offering effective solutions but I am told that their rates of success are not properly measured, so there's no proof they are effective. And my surgeon only wanted to discuss surgery and when I queried what would happen if the pain came back, he said he would bring me back for more surgery.

The body is constantly replacing cells and might be supported to heal itself. I am willing to be proven wrong and take the effective treatment. If I had cancer I would obviously say cut it out or give me the chemo, if that is the evidence based treatment. This is not cancer and it is not properly understood yet.

[Avourneen in reply to MalachiteAli]

Hi Malachite Ali,

That akes much more sense. I had my first op in Wales when I lived down there and the "spacilaist " I saw also knew very little about endo. He did ablation which was completely ineffective, maybe it was the same Dr?

It's very true that there is not brilliant evdience behind surgery. Th eonly comprehensive survey I have seen which was carried out by the RCOGS siad that 75 % of women who have surgery for endo have to have another operation within 2 years. Which is pretty appaling.

I think it makes a huge difference who carries out the surgery and how. You are also absoloutely right that no comprehensice records are kept of suceess rates and times to reoccurance of endo after surgery.

Whenever I suggest that comprehensive records should be kept certain people pop up to tell me that it's impossible to keep records of success rates with surgery as every woman is different and one woman might have the endo come back very quickly and another one not at all. However, I feel this to be a complete get out that leaves surgeons free not to have to be accountable. The reason for this is that for a start different surgeons use different techniques, for example a famous NY doctor uses a blue dye technique which makes endo far more visible and easier to excise, a Texan specialist uses a second look technique to reduce adhesions, some doctors use robotic surgery which apparently gives a much greater view of endo which cannot be seen in traditonal surgery, others have a specific technique for removing endo from the colon which is supposed to be very effective.

So clearly all doctors are not using the same techniques. If non of this is monitored and no record of different surgeons success or non reoccrance artes are ketp we cannot see which approaches work more or less successfully. These new techniques should be assessed and monitored to see if certain surgeons are getting better results with one or other technique. Also if surgeons results were monitored and assessed any surgeons whose patients were regularly getting high rates of complications or reoccurance after a very short period as a matter of course could be investigated. Everyone who uses this ite or communicates with other endo sufferers must have found that there are certan surgeons who have large numbers of patients reporting terrible outcomes. I think the idae of saying well each womans endo is dfferent is true but this is pretty much the same in every disaesae every cancer sufferes cancer is different even if they have the same type but we don't use that excuse to say cancer research cannot be carried out.

We do obviously need better treatment and especially good alternatives to repeated surgeries. Andrew Horne at Edinburgh Uni has something promisisng in the pipeline as does the University of Oregan. But something else that can be used now is not ready, the Umiversity of Oregan have run out of funding for their research and I'm trying to get in touch with people who might help extend funding but for now there is literally nothing else available.

I had surgery for the second time three years ago but my gynae decided to leave some endo in the bowel as he thought it was small and looked a bit tricky to remove. Now that piece of endo is 3 inches by 6 inches and causing me huge problems eating and going to the loo. It has also spread into my diphragm and posssibly lungs and th epain I ma in just increases daily. I've been on a really high dose of progesterone to stop it spreading but this clearly hasn't worked and I've been told that doing an operation now would be too risky. So not having surgery and leaving it to grow also carries risks. It isn't cancer but it can do huge damage if it is left to just keep growing and growing. When it spreads it can crush organs in it's path or bind them together so badly the no longer function.

It's really an outrage that we have no better treatment than cutting parts of our organs out and that surgery is so poorly monitored and assessed. Our best hope is defineitly to get more research done into non surgical alternatives but be aware that not having surgery can also be a risky option. Endo is referred to as a benign condition but it doesn't feel very benign. Im glad that you are being taken seriously, be very careful which surgeon you choose and keep an open mind about what might work for you. I really hope you can get something that helps.

[joey81]

Hello, it's totally natural to be nervous and afraid what you may find out. I'm always like that before any test or scan. I just wanted to ask where is your endo exactly? Please make sure your surgeon is a endo specialist not just general. Also you could consider excision to remove the endo only. Please double think if you really want a hysterectomy as I've heard so many stories where women have regretted it or it wasn't really required. Do you want any children?Wishing you all the best xx

[MalachiteAli in reply to joey81]

Thanks for your reply. They have told me that endo is on left ovarian fossa (wall of abdomen) and pouch of Douglas/rectouterine cavity, but it may well also be in other places as I have bowel and bladder symptoms too, which is why I'm having the MRI. My doctor is a specialist, I looked for him via bsge and called his secretary to make sure I was on his list not the general gynae list (which I was on despite having already had endo diagnosed during lap surgery).

[Clarice123]

My daughter has suffered since she was 13 and wasn’t taken seriously, I’ve had endometriosis so recognised the signs, she started her periods at the age of 10. Fast forward to 21 and we were so fed up with the inept women’s services in Chesterfield that we paid privately for a consultation. He was a BSGE endometriosis gynaecologist, you really need it to be a BSGE surgeon, it’s their specialty.

Fast forward again 6 years, after many surgeries and hormone treatments she’d had enough. Her case isn’t straight forward, she was born with a unicornuate uterus (half a womb) and a non communicating rudimentary horn that had been constantly bleeding into her pelvis ever since she started her periods, it’s been very painful for her. She’s had 2 miscarriages that were traumatic especially as a lot of the staff at our local hospital hadn’t heard of her condition. She’s having 2 periods a month and simply can’t work due to the pain and exhaustion.

She’s asked her surgeon several times for a laparoscopic hysterectomy to take the knackered womb out, but all he bangs on about is her ability to have children. She has 2 dogs that we have to look after, she certainly couldn’t cope with a baby, she simply has no life. Her surgeon has now suggested she has a psyche assessment and pain management, he just isn’t listening to her and has his own agenda, basically gas lighting her.

We’ve paid for her to see another BSGE consultant in a different city, he listened to her for over 40 minutes, we were even willing to pay the 8k for the operation. He agreed that she has tried everything offered to her and will do the procedure for her. He wouldn’t let us pay for it and has transferred her onto his list at the NHS hospital he works at. The other surgeon was so arrogant, my daughter had a post operation infection after one procedure, it happens. On her medical notes he disagreed that she’d caught it on HIS operating table and he attributed it to an STD, gonorrhoea for example. Who in the hell wants sex two days after a laparoscopy, plus she’s been with the same partner for years, absolutely disgusting. Now we no longer have to see him we are formally complaining, our local M.P is involved as he is astounded at the way she’s been treated.

As women we have to put up with so much, my daughter is so excited that she can finally get rid of her womb. She has just today been to a tattoo parlour to discuss having a lotus flower just below her belly button, that’s how much she wants it.

For her it hasn’t been a difficult decision, but having her uterine condition has many limitations so perhaps it’s made it a little bit easier for her to deal with having a hysterectomy.

I hope you find in your heart what is really important to you and what you want. It may take a little time searching for the right thing to do, but you will get there.