Inquiry for my wife: My wife had a c... - Endometriosis UK

Endometriosis UK

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Inquiry for my wife

Worried-Husband profile image
8 Replies

My wife had a c-section 4 years ago. Everything was going ok except for constipation that followed delivery and persisted until now. She miscarried last October and had an ectopic pregnancy two months ago. Her beta hcg is now zero but she has a cramp that lasts for a few seconds. The frequency of the cramp varies everyday. She also feels something pressuring her while passing urine, faeces and gases. She went to her doctor who told us that she may have endometriosis and told us that she may need a laparoscopy. But I feel not convinced of laparoscopy as initial treatment. What do you think?

Many thanks

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Worried-Husband profile image
Worried-Husband
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Sheri26 profile image
Sheri26

A laparoscopy is the only way to diagnose if your wife has endo, some woman have had scans and MRI but as far as I am aware these do not show endo, but can show fibroids and cysts.

Impatient profile image
Impatient

Laparoscopy is the ONLY way to diagnose if she does have endo, and locate whereabouts it is, and how far each lesion or growth has spread and also how deeply in to other organs it has spread.

It is the very best way to determine if endo is the cause of her problems and if it isn't endo there may be other things going on around the outside of the vagina, cervix and uterus as well as the bowel, which a laparoscopy can identify.

One common problem after pregnancy or any surgery or indeed after any trauma can be the growth of scar tissue called adhesions - which you can tell from their name are sticky - of the strength of superglue.

Adhesions always grow from any tummy trauma site -even a child jumping on the tummy, or falling off a bike in childhood can trigger adhesions, it doesn't have to be an internal trauma.

Adhesions carry on growing they can glues ligaments and tissue and organs together in anyone man or woman, and they can constrict around the bowel or intestines causing a sever tightening which won't budge to let poop pass, it can also grow round the outside and the inside of the cervix and vagina causing pain having sex.

Any activity that requires the adhesions to be stretched given their strength will cause them to rip or tear at the weakest point. usually where they have attached to you, and this is like tearing off a superglued on plaster from the skin taking several layers of skin with it. it is excrutiatingly painful. Have an ectopic surgery is definitely a trigger for adhesions right where you don't want them to be.

If she does have endo - these adhesions can and do grow from endo lesion sites. you cannot stop them, as the body must always scar and heal and these adhesions are actually a barrier or cushion of protection against unwanted future injury. The good news is these can be cut right back in a laparoscopy if they are found to be everywhere, and this can provide a huge amount of relief and get your bowels working again. The bad news is that any pruning back of adhesions is likely only to be a temporary measure and the wretched things do carry on growing. Some surgeons will put in buffers or barriers between organs to stop them sticking together which can help a lot too.

If endo is found in a lap op - then if it is mild it is usually lasered off. for shallow endo this should be enough, but if the endo is deep growing then any residual cells stuck underneath the burnt layer will continue to be active and able to bleed each period and spread too.

having bowel problems and constipation issues is definitely a sign of more advanced endo, and if it turns out from the lap op that your wife does have more complex surgical needs then generally they tend to stop the op and let her recover and will refer her on then to one of the acredited endo centres in the UK where specialist gynaecologists, colorectal and urology surgeons are on the teams that can carry out the much more complex surgery required.

at its worst this can mean removing a section of the bowel, but that only occurs in a smaller number of cases, most ladies can feel a lot better with the endo shaved out of the bowel muscle walls.

It is a complex disease - because like cancer it can and does grow randomly anywhere in the body, most commonly in the lower tummy close to where the cells originally come from which is the uterus. That said - even without the presence of endo, and just having scar tissue adhesions the problems can be pretty substantial.

I would say if she has been offered a lap op to see whats going on - absolutely jump at that chance. for many of us it takes years and years to get the referal to have a lap op, which then confirms what we have been complaining about but so late that far too much damage has been done already to ever be normal again .

In my case 29 years , but the average wait is 7 years these days for ladies and teens presenting with symptoms of endo.

On behalf of all of us - 100% take the lap op. find out for sure what if any problems there are, and then she can get the most appropriate treatment to improve her quality of life. I know and appreciate she may have reservations having had a recent ectopic experience and only just be recovering physically from that, but if there is trouble brewing inside it is best spotted sooner than later.

and well done for asking questions. we don;t get too many hubbies and boyfriends and dad's on the forum, mores the pity, so we do appreciate you being here and caring so much for your wife. Pop back any time with questions she may have on the surgery or any of the treatments she may need. There are pushing 6000 forum members with endo on here and someone is bound to have helpful advice for her and you too.

hope it isn't endo - but it could be and if it is, then she's certainly on the right track to finding out.

Worried-Husband profile image
Worried-Husband

Many thanks indeed for Sheri26 and Impatient. But the question now is that can we have any medication that delays or kills endo patches before going for a lap, just as an attempt?

in reply toWorried-Husband

If you decide to have a lap ( I agree with everything above & that the lap is always necessary) then you want the surgeon to be able to see the endo as much as possible so its advisable not to try to supress it in any way ( there are no medications that kill endo but medications offered supress its activity only for it to rear its ugly head once stopped) women who are prescribed medications are often advised to stop them atleast a month before their lap for this reason.

Websites you may find useful are Endometriosis.org and Endopaedia. After the lap the surgeon will discuss the findings of the lap & also your treatment options which may include medicatons.

Just a thought but are you're wife's symptoms linked with her cycle? It's not something you mention in your post ( infact almost the oposite if she has daily pains) endo can affect each woman individually and it is certainly possible to have daily pain but if you're not convinced that it is linked to her cycle then you could seek a GI referral and a urology referral but I personally would still go for a lap as an explorative / diagnostic proceedure if you've been offered it. Good luck with whatever you both decide x

Worried-Husband profile image
Worried-Husband

My wife's period has been away since her last miscarriage. Her last period was in Jan 2014 and still until now no period has come. I mean the cramp she feels has nothing to do with her period because this problem cropped up following the hcg drop to zero (approx. 10 days ago). So, the whole issue is new.

LeyaC profile image
LeyaC in reply toWorried-Husband

I'd wait until after the lap to have any treatment as if it is Endo, its suppressing what's there. If it isn't, incorrectly treating would be bad. I'd wait until afterwards but to help the cramps she can take 2x500mg ibuprofen with 1x500mg paracetemol if it gets unbearable. I wish your wife the best of luck, if you're happy to, I think we'd all like to be updated. The best thing you can do is to just be there for her, that is all she will need and by the sounds of it, you're already a great husband. Its a lot for someone to go through and their partner too so you'll both need support from each other and family members. We're all here for you both as well. Best wishes!!

Leya x

Scooteeder profile image
Scooteeder

Hi,

Very delighted to see a concerned husband posting on here! To be honest, I'm surprised there aren't more. Being a couple is just that - a COUPLE.

When a wife or partner has Endo, it affects the MAN too. He experiences not exactly what the woman is going through; rather his own version of things. If the woman is infertile as a result of Endo, the man is affected by this. When a woman suffers from bad symptoms, or has to have surgery, this impacts upon her partner/husband. It is therefore good to see a husband who takes note of his wife's symptoms, shows an interest, and wants to understand. Good man!

The more you, as a good husband, can become familiar with Endo, and get "clued up", the better. Then, you can understand more about your wife's symptoms, about future treatment, and about effects of any symptoms and treatment. You are able to back your wife up, as well as ask questions and seek for answers in your own right. Not only does this help your wife, but it is a good idea for you, too. Many men are probably affected by having a wife or partner with Endo - but because they stay in the background, and do not get "clued up", perhaps they are of little assistance. They may not attend appointments, they may not ask questions... and any concerns or fears that THEY have in their own right may well remain without being addressed.

My husband attends ALL the appointments he can with me. That way, he can better understand my symptoms and treatment options - and can ask questions in his own right. This is maybe something you and your own wife could consider - like I said, Endo affecting one half of a couple is rightly a shared experience.

As to your question - I can only add a little to the other answers here - they are already full of useful info. Point one - a lap is the ONLY way to get a definitive diagnosis of Endo. It is also useful, as other things can be done during a lap; such as removal of Endo via laser or excision. During the lap, a surgeon ought clearly to be able to see where any Endo is, as well as being able to see if there is anything else causing problems, such as adhesions. Therefore, if a lap is suggested or offered, it is prudent to consider having it done.

Point two - there are medications that women with Endo can take. However, they DO NOT kill or remove Endo. All these medications are hormonal in nature, and are designed to stop a woman having periods. They fool the body into thinking it is pregnant or menopausal; thus the woman does not menstruate whilst on the meds. Things like the Pill (e.g. Marvelon/Dianette/Microgynon/Yasmin), GNRH treatment, Zoladex, Prostrap... these can be used to alter a women's hormonal balance and stop periods. However, there ARE side effects:

1. Always remember that they cannot be taken indefinitely, and that once you stop taking them, they Endo is "active" again (i.e. fully symptomatic).

2. They DO NOT kill or remove Endo.

3. If you are thinking of starting a family, you cannot conceive whilst taking any of these medications.

4. Women taking these medications may experience menopausal symptoms (e.g. hot flushes, weight gain, loss of libido, vaginal dryness, thinning hair), or they may suffer mood swings, water retention, bloating, etc. If a woman intends to use such a medication, it is always a good idea to fully check out what the risks and side effects are. These can be weighed against any potential benefits of taking the medication, to see if it helps in reaching a decision as to whether to go ahead or not.

5. Women taking these medications can be at greater risk of thrombosis (blood clots in veins), blood pressure changes, some cancers - again, check out any risks in advance.

6. Perhaps the biggest problem of all is that these medications MASK the symptoms of Endo without treating it. They suppress its activity in the short term, meaning it actually may not show up as well during an MRI scan, or later lap. This means that in the long term, if a woman takes such medication, it may delay a clear diagnosis of Endo.

I do hope that you can come to an agreement as to how to take the matter forwards - in my opinion, the lap sounds like a sensible idea. However, any decision about treatment should be fully "researched" - find out the options, the risks, the side effects - then make a decision to have treatment that best suits your wife's needs and lifestyle.

By the way, probably the "best" chance you will have at getting good quality treatment isby seeing an Endo specialist, as "bog standard" Gynaecologists often do not know enough about the illness. A list of approved specialist centres can be found at bsge.org.uk/ec-BSGE-accredi... ...

All the best - I truly hope that something can be done to sort out your wife's symptoms. Take care - the both of you - look after yourselves, especially at this stressful time. Whatever choice you make, remember there is this forum that you can come to for advice and assistance.

Best wishes,

Elaine.

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