Aviva - Excluding Endometriosis as a "Chronic" Condition

[HTFCacc2022]

Hello

I'm hoping someone could give me advice or be able to provide some support during this tough time which my wife is going through. I'm doing my very best to support her but feel like I can't do enough most of the time.

I know we are lucky in that we have private medical insurance through my work and I've always ensured that my wife is covered as well. I read about all of these stories about women in pain with endo who can't either get a diagnosis or treatment and I can only understand what they are going through. The NHS have completely ignored my wife all the way through and the only way I got a diagnosis and referral for my wife was by paying for a Private GP. I have to manage all of her treatment myself and coordinating between the various consultants.

Aviva have been very good to date, however, they have now said that they won't pay for anything past the end of the year because Endo is a "chronic" condition and it's specifically excluded from their T&C's as chronic.

My wife started having problems in 2015 which were all around her stomach so they tested for IBS/IBD, gallbladder blockages etc. As they couldn't find anything, they kept dismissing her. As mentioned above, it was only when we paid for a Private GP in 2018 did they suspect Endo. As it went undiagnosed for so long, it was all over her bowel, bladder, pipes etc.

She is in horrendous pain after eating, which is up in the 9/10 range every night (and my wife can tolerate a lot of pain with her epilepsy). I get her to bed after our main meal of the day (she'll only have a yogurt at morning and lunch) with a heat pad and electric blanket. It's had an impact on both of our mental health terribly, I'm getting myself counselling but my wife is refusing to get mental health support as she thinks the physical element needs to be sorted first.

The Endo was removed in 2018 and this was followed up with a hysterectomy in 2019. This didn't stop the pain and after more tests they want to proceed to remove her ovaries to induce a surgical menopause (bear in mind, shes only 33). The pain is definitely worse around her hormonal cycle. HRT may or may not be an option but her experience in the past when trying injections to stop her ovaries from working did not go well with her epilepsy.

As mentioned above, the endo has caused no end of problems in her body and there's digestion issues, blood issues etc. She is currently under various consultants but they don't work together so I have to co-ordinate the treatment and next steps etc.

Aviva have now said that the Endo is chronic so they won't pay for anything past the end of the year. I appreciate that this is going on for a long time but we are stuck between a rock and a hard place because they won't do the ovaries operation until bloods give the OK, but they want time to see if they recover (there's a suspicion of long COVID as well!). Aviva are now cutting us off at the end of the year as endo is "chronic" and there's no way I can self pay for any further treatment.

Has anyone else had this problem with Aviva or another insurer?

Any help or advice would be much appreciated. Sorry for the long post!

[Lindle]

I'm so sorry you are both going through this - it really is a shared disease and it is wonderful you are supporting your wife.

The problem with your private insurance isn't really the issue here. They will usually only pay for treatment so far due to the chronic nature of endo for some but your wife has what is classed as severe endo (stage 4) and this must only be treated in a specialist endo centre in tertiary care by a multidisciplinary team of 2 lap surgeons plus colorectal and urology as appropriate. There are a few private centres but a lot of private insurers don't cover them as the cost of surgery is so high. So I wonder if the surgeons who operated on her were working within the required multidisciplinary team - you certainly shouldn't have had to coordinate her care. A hysterectomy isn't a treatment for endo as such but sometimes it is necessary along with expert excision within such a centre of excellence.

What is vital now is that she is treated by a specialist endo centre, whether on the NHS or private.

[Littlepeax]

I'm so so sorry to hear this, how horrible for the both of you. I can't give advice with regards to Aviva but I wanted to mention what I did to help with my endo pain. I've had two surgeries to remove endo and it helped but it came back a few months later. I decided to try a new diet after someone on here recommended it to me. It worked so well for me and it was the first time I had manageable pain after years of suffering. The longer I was on the diet the better I felt. Pain killers were a thing of the past! It's called the AIP diet. For me personally I cut out alcohol, caffeine, gluten, processed foods, abd sugar. I was eating sweet potatoes, steak/chicken and veg most days. Also organic where possible especially with milk. I'm not sure if this helps but it made a difference for me so thought I'd share. All the best xxx

[Flynn_Maverick]

Hello, really sorry to hear what you are both going through, thank you so much for supporting your wife the way you do, not everyone has this support and compassion available to them and it makes a huge difference. To address the Aviva point specifically, I am surprised to hear this as I was in the exact same situation in that my initial policy was through my husband’s work, when he left that company Aviva let me transfer everything over to me personally and (whilst I now have to pay a lot more monthly) they have kept my endo under the same claim for about six years now and have covered two surgeries and have agreed to pay the majority of my next (fifth) operation. They are however making it incredibly awkward as I also need a multidisciplinary approach with three surgeons (thoracic, hepatobiliary and gynaecology) but they haven’t suggested they won’t pay, they are very much just wanting info on absolutely everything. The only thing I can think of is that I do have “medical history disregarded” in my policy, but that said they have kept it under the same claim so that kind of goes against that theory. Have you got what they have said in writing? I do know they absolutely will not cover anything fertility related however if your wife’s symptoms are so debilitating they should cover endo surgery for those reasons. Happy for you to message me directly, but I would ask for the rationale for refusing further cover in writing. I know the policy renews each year and you will need to repay the excess if treatment goes over two consecutive years, but cutting you off altogether doesn’t sound quite right to me. But it depends on your individual policy. Best of luck x

[Bespp]

Hi, I am not sure on aviva but I am on bupa through work. What i wanted to share in my case is that last year they did some changes about silver and platinuim cover. Have you checked with them maybe you need to pay some extra to get her the higher cover with aviva too. Sometimes they fail to mention this things....so maybe worth a try. Good luck to both of you and your wife is very lucky to have such support from you

[Avourneen]

I have stage four endo and suddenly had an sharp increase in the pain I suffer specifically after eating. I was concerned that y private doctor wuld automatically jump to it definitely being endo without checking for other things.

I went to a gastroenterologist I know well he did some scans and said I had gallstones `(these can be caused by the body making too much eostrogen for years so they are very common whe you have endo) and he did a gastroscopy and could see I had a hiatus hernia. This means the food and my stomach we actually pushing back up into my chest after I ate. Causing terrible stomach pain after I ate.

The worst thing you can do if this is causing th eproblem is lie down after eating. I talked to the gastro and he recommended I change the times I eat (much earlier in the day) and made sure I stopped lying down after eating. I still have lots of pain form endo but this burning after eating has completely stopped.

Sudden pain after eating doesn't really sound like endo pain. When you have had endo for years you suspect of causing everything but this isn't always the case. But te high levels of eostrofgen over years can have effects on other functions, apparently it causes the gall bladder not to empy properly.

Maybe check out these two possibilities which aviva should cover as well as or before looking for more endo surgery.

Aviva's position is strange as all endo is chronic it is a chronic disease , I don't know what to suggest for that. But take care with private doctors it's a very tricky situation on the NHS you virtually can't get treatment but going privately you must be really careful about which doctor you choose. I sawa specialist who deliberately suggested he leave some endo in the bowel as the op was very complex and now it has spread again everywhere. I believe he mis advised me deliberately to get an extra operation with an extra pay out when he should have done everything at once.

There are some women on here who have had a huge number of repeated procedures which have left them in worse condition or operations that were completely unsuitable for the stage of their disease etc. I have had two operations one of which was an ablation which was of no use and should have been an excision. Be very careful and research who your surgeon is and the kind of feedback patients give (you probably need to go to facebook to get honest feedback as they all only include glowing testimonials on their own sites).

BUt maybe get the endo looked into properly and MRI or TV scan by a really good specialist will show what is wrong and where it all is. But also check with a gastro to see if the pain fater eating is something different.

Good luck and thank you for helping your wife so much. Endo is a very hard condition to bear and having a kind supportive husband must give her so much hope and strength.

Good luck