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Endometriosis UK
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1st Lap but husband has doubts

Hello, I have my 1st lap a week today and I’m bricking it! I’ve had symptoms since I was a teen and I’m now 45, it’s been diagnosed as IBS all this time but never addressed the gyne side of things. They think there is pretty good evidence that I have Endometriosis but my husband doesn’t see the pain and lack of curing the problem from a lap as worth it as I am 45 and probably have my menopause in the next 5 years or so. It’d be interesting to get an older woman’s view on this and what their family thought. Thanks for reading.

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5 years is a long time to continue to experience pain and a lap will help you to know what you’re dealing with. Lots of women on here experience relief after a lap- is yours purely diagnostic or will they treat what they are able to?

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Hi thanks for replying. They said they will remove any if they find it. I’m so sore and bloated constantly at the moment. I’m dreading hurting more!

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I can’t see your husbands point of view I’m afraid. If there’s a chance the lap will ultimately make you feel better (although maybe a bit worse in the short time whilst you recover from the surgery) then surely it’s a good thing for you to have it done? I know it might make childcare difficult though. Can you call in all possible favours for help with school run etc? And get as many meals as possible in the freezer beforehand to minimise what needs doing whilst you recover?

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I find it absolutely ridiculous that your husband would have that kind of opinion. Wouldn’t he prefer his wife to be healthy, pain free, and have answers? Menopause won’t exactly cure your endo, so menopause in 5 years isn’t the answer.

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Hi HettySpaghetti

Good question and I always like an older woman’s view :)

I’m 44, 45 in Oct. I’m writing because I wanted to see if I could wait out menopause instead of opting for further surgery - I had one lap in 2015. My mum had an early menopause at aged 42, so I reckoned that I had a good chance at managing my pain with the help of the pain management team whilst waiting out menopause. However, two and a half years in and I’m beaten. I’m also off Work on long term sick and depressed because of my lack of mobility. So in my experience, menopause can be at least 5 yrs off and that is a long time to be in pain, with considerable consequences for your work and social life.

Rxx

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If you can get anytime pain free even if it’s less than five years it’s worth it. I know for me the pain is excruciating and puts me out of action for about three days per month.

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Hi I am 46, probably peri menopausal. If your doctors think endo and are recommending lap then it's probably a good idea to have it done. Could ask re MRI but lap seems to be 1st then MRI if necessary. My pain etc has become progressively worse from the start of menopausal type symptoms a year or so ago. Recently started Zoladex injections to shut down ovaries pending hysterectomy/ovary removal. The difference to my pain levels is amazing! I have adenomyosis as well as stage 4 RV endo plus endo on diaphragm and wish I had got myself checked out sooner, my op may have been less risky. Currently am being told 3 surgeons and possibly 6 hours, hopefully this is an overestimate!!

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Hi there. I had surgery in July. Like you, there were supposed to be 3 specialists there but one was off sick. The op went ahead though and I was on the table 5 1/2 hours.

Don't worry! I was only in hospital overnight. The pain wasn't too bad though it took me a while to recover fully. I may need another op to sort me fully but I am fine with that. Fingers crossed all goes well for you and you feel well soon x

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Hi

Mmm. Well my story is similar- symptoms since age 12, worse from mid 20s but most symptoms were buttock, back and leg and so never got investigated down the Gynae route. At age 40 when I suffered debilitating pain which turned out to be nerve compression and damage to motor nerves in my leg and buttock, it got investigated as a Gynae issue and 2 years later I had a lap which found endo and possible adenomyosis too (only 6 weeks ago). Whilst it isn’t a cure, I cannot begin to tell you the mental benefit of actually having a diagnosis- a justification that I’m not going mad and an explanation for the nerve damage. I expect you’ll feel similar. Are you under a BSGE centre? That would be your best chance of getting diagnosed and treated. I’m lucky that my partner understood that despite the very real possibility that I’d feel no better I may obtain closure!! I’m on Prostap which has helped but is now losing its effectiveness. I’m now having to consider a hysterectomy since they cannot operate on the nerves themselves as it’s too risky. I have no guarantees that even this will help my nerves but, based on my Mother’s very late menopause, I could have another 15 years like this until mine properly kicks in! Only you know how you feel physically and mentally so only you can make the decision for you. Scans showed nothing in my case so a lap was my only option. I’m glad I had it and recovery was straightforward. If you go ahead with it, I think you’ll feel more able to accept and deal with your diagnosis ( either way) and then begin to get on with life.

Good luck!

X

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Your endo may or may not die off after menopause. Menopause isnt a cure. Some womens endo remains active after menopause or hysterectomy. Point one. Point two. Your endo may die off after menopause if youre lucky, but the damage the endo has already done wont. Endo damages organs, causes adhesions, misplaces organs and leaves problems that will need to be addressed. So no. Your husband is wrong. Waiting 5 years is likely to do nothing! Xx

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I am 44. I got diagnosed 18months ago and had surgery last July.

I feel better knowing what the problem is. I have been able to research this illness and then get support from communities such as this. I have also been able to educate my partner, he comes to my appointments with me so knows everything that's going on.

I don't want to be negative about your partner but I don't think he is being overly helpful here. It may well be because he is worried about you and can't express himself. Ask him if he wants to go to your appointments then he can get a better understanding.

Please go for the lap xx

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Hi, I felt similar to your husband, especially as one lap had worked for a while, but then it all got worse again, quickly.

However, as it turned out, mine got worse BECAUSE my menopause was beginning, and it got progressively worse and worse: I was in agony for about a week or more either side of my (increasingly short and light period). I had a mirena fitted - and that worked for me (the op was to fit the mirena, but they did a bit of tidying in there, too). The mirena worked for me, brilliantly for about 6 years until I had it out 2 years ago when I was definitely post-menopause.

I would have the lap - just to find out what's going on, but I would think about having the Mirena fitted, as the menopause is not necessarily easy and simple on its own - never mind with Endo.

NB There is no direct correlation between Menopause and endo easing, if endo tissue is binding organs together , or causing scarring it doesn't magically go away with menopause. The progesterone in the mirena should / could help, the endo tissue to subside, but it does have to be a mirena: coils with oestrogen in will make things worse.

NB for years I was told my Endo was 'just' ibs. The gynae was furious when I eventually got to see him, he said many women are 'fobbed off' being told their pains are ibs when often it is 'Endo'.

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Ive been waiting 9 and a half years to get where ive got to im 47 had 2 laps numerous scans etc and now on prostap injections which have worked wonders. Im now having a full hyterectomy in march but has to be open surgery because of the adhesion that i have on my bowel and ligaments. Have your lap to get a diagnosis and it can possibly be treated there and then should it be the case. Im sure if i had been diagnosed earlier i wouldnt be needing open surgery. Good luck

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This is my favourite post ever because of all the replies! They have helped me understand and feel like I’m not rare. My endo was diagnosed after infertility issues and didn’t bother me until my third child was 3 and I was 42! I developed strange abdominal symptoms that made me worry I was dying. I had colonoscopies and gastroscopies and abdominal CT. Finally I had to say tomthe surgeon maybe it’s endometriosis. I had a laparoscopy and 2 hour operation where they strip the peritoneum away off your ureters etc.

Heaps of endometriosis scattered through my pelvis. They put in a mirena IUD. For a year I was better. Then the PERIMENOPAUSE CAME.during that time you get high oestrogen levels and this aggravates your endometriosis. So I was having hot flushes plus terrible

Endo pain and fatigue for 6 weeeks

At a time. I was desperate. The gynaecologist said “ here is some oestrogen for the hot flushes and you could have a hysterectomy”.

Well the oestrogen tablets really made the endo terrible. I knew a hysterectomy wouldn’t help me

With endo all outside the uterus in the pelvis! I then found an endocrinologist in Australia who just does women’s hormones. He saw me for 5 seconds

And said you just need some progesterone . It will fix your hot flushes and suppress your endometriosis at the same time. The mirena acts locally but for your endo spots further away from the pelvis this will help you. So in 12

Hours I was feeling better. Thank you Norethisterone 5 mg daily.

Now it is 4 years later and the endocrinologist said you must be post menapausal now stop your progesterone and we will put you on tibolone...... 6 weeks later my nemesis endometriosis returned!!!! Misery worry anxiety.... so I’m just went back on Norethisterone and feel good again.

Endometriosis can be terrible around menospause . It is not an easy time. You have a long way to go. The average age of menopause is 52. I am lucky as mine came early but I’m still not out

The other side.

Get it sorted! Laparoscopies are no big deal.

Please any other older women with endo tellmyour stories ! It helps to know I’m

Not the only

One!!!

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Is there any particular reason why your husband thinks it's not worth it? I was diagnosed in 2016 (I was 38 at the time) so a bit younger than you but I can't stress enough how important it is to have the disease diagnosed and correctly staged and not to just assume that because you're a little older it's not worth it.

I had always had painful and heavy periods right from being 13, and they had got worse through my 30's, but I had a massive and sudden increase in pain in early 2015 where it went from a level of pain that was miserable but that I could cope with to a level that I couldn't manage at all (and I had a 9lb baby at home with no pain relief which gives you some idea of where my pain threshold is). I then went on to be diagnosed with severe disease. It was growing into the wall of my bowel and strangling my left ureter, and if it had been left untreated for much longer I would have been facing a bowel resection and kidney damage. It's not just the pain that is the problem, it's also the long term damage that it can cause.

It is definitely worth going ahead with the surgery. Please don't wait and risk things getting worse. x.

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To play devil's advocate here, could it be that your husband is frightened at the prospect of you having surgery and possibly a diagnosis of something he'll struggle to understand? I absolutely agree with everyone here that you really should go ahead, even if it is just to be able to understand what's going on for your own mental health!

I met my partner 5 years ago, just 3 months after my first lap that diagnosed endo and sadly the pain was back within a 4 months of us meeting so he's understood what I go through. I've just been through another 2 laps, excision and ureteral stent placement and removal. While he's been incredibly supportive, I know that it's really stressed him out to see me going through all this and he's felt helpless at times and he's struggled to cope with that.

So maybe it's not that he's not being supportive and maybe it's fear? Just a thought. Good luck and I hope you get some answers and relief xx

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What wonderful replies! Thank you all. I will show him your messages and he can read for himself. I’m hoping the op will go ahead as I’ve been warned because of the bed shortages that it may be cancelled at the last moment. I will speak to him tonight so he understands. X

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I'm finding all these replies really reassuring too. I'm having my first lap on Wednesday after 2 years back and forth to the gynae clinic trying to figure out what's wrong with me! I'm 40 and I suspect perimenopausal (my mum went through menopause in her late 30's) but the pain I've suffered each month since having my daughter nearly 3 years ago (I suffered terrible SPD throughout my pregnancy) has been gradually getting more and more debilitating, right across my abdomen but particularly in my left side groin and buttock and down the leg, accompanied by regular kidney infections (left side too) I've had so much time off work this past year it's ridiculous. I'm not sure my gynae or GP are convinced it's endo but I'm really hoping the lap will give some answers and some relief. I've honestly been questioning my sanity at some points! My partner is supportive as he just wants me to get better (he's not very patient or understanding when I'm poorly I must admit) although I have had to keep stressing that I'm not going to be able to cook/clean and take care of our daughter properly for a few days post surgery although it'll still probably come as a surprise to him when I'm asking him for help next week! lol

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Hello Hetty,

I'm 43. I had symptoms since puberty too. I gradually worsened 3 or 4 years agoafter coming off the cp when my husband had the snip.

Eventually I had perpetual chronic fatigue and developed bladder problems and started to wonder if I had fibroids or a kidney infection finally a lady GP suggest Endo and found a lump on an internal exam which was very scary.

I was very reluctant to have surgery as I considered my pain manageable, but went ahead on the condition they treated what they found.

They did treat a small cyst but after so many years what they found was that my Endo had glued my bowel to my vagina and distorted it out of shape into a u bend and it was penetrating the wall of both organs. Endo can become dangerous if the bowel is obstructed or other organs affected.

I tried hormone treatments but my Endo was advanced and generating it's own oestrogen which RV nodules can do.

I had to have extra scans and investigations and then a second lap with a bowel specialist involved to save my bowel and vagina which took nearly 5 hours. Recovery has been tough but aside from avoiding a future bowel resection from Endo damage I have had unexpexted improvements in back pain that I'd always put down to a disc injury and bladder issues have vanished too.

It's definitely worth doing the diagnostic so you can take appropriate next steps, if I'd left mine my bowel would almost certainly have been penetrated causing much more harm.

I'm sorry your husband doesn't yet fully grasp the full effect of the pain and fatigue you experience. It took my husband a while for the penny to drop, he would get frustrated and impatient. I guess they tend to struggle when it's invisible. I shared quite a few blogs and things about the pain and men's perspectives and then at some point he connected all the dots and realised just how bad it had been affecting me for how long. He's been wonderful ever since.

Good luck in your op. Xxx

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With regards to your husbands, no uterus no opinion, would he like to live with his balls in a vice for the next 5 years??? xx

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My operation has been cancelled. Bed shortages. I have to wait until March now. 😪

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Hey, sorry if this is a little personal but where abouts are you from? I’m waiting for a lap in Manchester and I’m scared of the cancellations and long waiting lists.

Sorry once again if this is personal xx

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I live in the Wirral.

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Oh no! I’m so sorry. Maybe the silver lining is that it gives you more time to get your head round it (this applies to hubbie too). Very frustrating though.

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