Hello everybody, I was looking around the internet for advice and thought it might be best to ask people directly!
My wife was diagnosed last year with Endometriosis after years of horrendous pain during her periods. It was all very worrying because for years she had gone to the doctor with the same symptoms and nobody had managed to diagnose Endometriosis for years. She recently underwent her first laparoscopy which we, probably mistakenly, thought would be a 'cure' for her pain. However the surgeon said that he wasn't able to remove all of the (insert name of whatever he needed to remove here) in one operation and she needed a second one, scheduled for April.
In the meantime he prescribed her a hormonal injection (I think it's called Triptovalin or something similar) that was meant to reduce the severity of the remaining endometriosis so that it could all be cleared in the next laparoscopy, however the injections have had a really negative impact on my wife's mental health, as well as making her really lethargic. She has recently started taking 'add-back' pills which are helping a lot, but even those seem to come with their own issues!
My questions to the group:
1) What are the effects that anybody here who has gone through these hormone injections has experienced? What helped you? Is there anything that I can do for my wife that might lessen the impact of the hormone injections?
2) Is a laparoscopy a 'cure' for endometriosis, or is endometriosis a lifetime condition?
3) We want to try for a baby soon. Will endometriosis, or any of the treatments affect our chances of having a baby?
Thank you in advance for all of your advice!
Sheriar
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Shez12345
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Hello I can't answer all your questions but I'll try and help.
There is no cure for endometriosis, it's a chronic condition but some people do get alot relief (years pain free) after surgery to remove the endometriosis. Others find suitable relief through changing their diet, or the hormonal treatment (like the contraceptive pill). But for others it's more a case of managing it, trial and error of the different treatments available.
Are you based in the UK? If so by the sounds of it, she qualifies for surgery at a BSGE centre, this is a centre that deals with the more complicated cases of endometriosis, for example when it is found on the bowel as you need a bowel surgeon to remove it. The fact they could not remove it all in the first surgery suggests that she would be counted as one of the more complex cases.
Endometriosis can effect fertility, but doesn't always. The best person to speak to about this is the specialist doing the operation they are able to do some test during surgery to check for example that the fallopian tubes are clear.
The injection sounds like it is a temporary chemical menopause injection. They thought behind it is that endometriosis requires estrogen to grow so by giving the body a break from periods and estrogen it can help. If she's really struggling with these even with the hrt add back she should speak to the Dr, although it can help, for some the side effects are worse than the endometriosis itself. So for some they need to make the decision to come off of it, which needs to be discussed with the Dr.
Hope this has been helpful. If there's anything else I'll try and answer.
Thank you so much, that was incredibly helpful. We are based in the UK, perhaps if this second laparoscopy also proved inconclusive we will look into the centre you mentioned.
Thanks again for taking the time to answer my questions, what you said matches up.with the reading I've been doing online, but I guess the bottom line is that i feel quite helpless given that my wife is going through such an ordeal, so I wondered if there was anything I could do beyond making teas and filling hot water bottles!
Hopefully the second laparoscopy will improve her situation.
I think what you're doing, researching and reading up on it yourself is a great help so that you understand it yourself. Those top ups of the water bottles may seem small but are massively helpful. Anything other than that would be depending on what your wife finds useful. I think for most of us just having the support of someone who has done understand is great, and the small things when we're in pain mean alot.
Hi Sheriar, first of all it sounds like you are being a very kind and supportive husband. Living with endometriosis is incredibly difficult not just for the person diagnosed but for everyone else around you especially those we live with. Just being supportive and listening/ being there if your wife is upset is a huge help! With regards to the hormones, I personally had a terrible reaction to them (I tried several different oral contraceptive pills) and I experienced very bad mental health issues when I am relatively (!) normal when I’m not on anything. I have had surgery no.1 and gone straight on the pill to try and prevent recurrence - came back in 18 months. Had surgery no.2 and not taken the pill, came back within 18 months... my latest surgeon has said that only excision, not ablation, or hormones, is the only thing that can properly remove endo and it has much higher success rates than ablation. Feel free to message me if you want his details as he’s wonderful, so lovely, and extremely highly regarded. And so thorough - he won’t leave any bits of endo behind. Hormones just suppress the endometrial tissue from going through it’s monthly cycle, which is where we get the problems - ovulation (as an acid solution is produced outside of where it should be) and then when we actually have a period (when blood ends up in the body where it shouldn’t be). Hormones cannot cure it and my personal decision is to never go near hormones again as it just masks the endo and potentially the damage it can be doing quietly... but that is my personal call, every woman and couple is different. There was nothing I could do to stop the side effects other than stop taking them and I was back to myself in about three weeks. Re: laparoscopy - there is no cure for endo but there is a gold standard of removal which is excision, as I mentioned before. The most common treatment is ablation, where the surface of the endo is lasered off and giving some relief. But endo can be deep in the tissue so you need an experienced surgeon to excise all of the endo top surface and its root, plus a margin of healthy tissue too. I think of it like if you cut the head off a weed it grows back. Dig it up at the root however... Both are done laparoscopically but excision is more painful but entirely copable with - I had six weeks off work instead of two or three and very much don’t regret my decision. I have never tried for a baby but yes I’m afraid it can cause problems. If you look on here however there are also lots of ladies who have severe endo and still had a baby. One of my work colleagues had severe endo and was told she probably wouldn’t conceive - she was pregnant about two months later! Do you know which organs the endo is on? It causes fertility problems when adhesions start interfering with Fallopian tubes etc but if it’s in common places such as bowel etc it hopefully won’t have done any damage. I hope this helps a little xxx take care and all the best
Thank you so much for sharing your experience, and I'm sure you're absolutely right that treatment and symptoms can differ wildly from person to person. But your explanation of everything has been incredibly useful and I think I at least understand a bit more about the situation now! There's lots of contradictory things available on the internet so it's great to hear from someone who's been through it.
Thanks for taking the time to reply! Sorry if the questions were silly or simple!
Not at all, nothing is silly when it comes to endo symptoms as it is pretty much bespoke misery to the individual woman - based on where it is and how the body reacts to it. Research is really the best way, you need to be fully informed of your options. All the very best to you both and I hope the second lap goes well for your wife xx
I think it is lovely and thoughtful of you to be this supportive. I don’t have much to add to the great comment of Christina other than that my friend has lived for many years with excruciating endo. She manages her diet by avoiding gluten and cows dairy. She had the surgery at least once and was afterwards told that she could indeed mother a baby. Something she had never allowed herself to hope... she was already into her 40s at that point, as well as her partner. They tried for a few years with two miscarriages. But now she is well over half way through her (naturally conceived) pregnancy at the age of 46! The baby is developing very well and we are all so very excited for them.
I have also heard that child birth can sometimes „cure“ endo. My grandmother actually decided to take her uterus out after having her two children, which stopped all her worries with the endo.
I wish you both the best of luck a speedy recovery for your wife xx
Thanks for replying! I'm really touched by so many people responding to my queries with their own experiences. So glad to hear that your friend had a happy conclusion to her story.
I wonder if you could elaborate on one thing: I wasn't aware that diet could affect endometriosis symptoms? We will definitely look into this if the laparoscopy doesn't have it's intended effect!
Yes apparently it does - I’m sure a bit of googling would give you some more clarity on why and how. I suffer from IBS (which is a gut inflammation) and Endo is alao causing inflammation in the body. Gluten and dairy have both been linked to creating/ aggregating inflammation in the body. For very robust / healthy people this can go unnoticed but for those already dealing with conditions it can make things worse. So I think the idea is to eat more things that are anti-inflammatory and leave the body more energy to deal with the endo (rather than add more load to it to clear).
But I am not an Endo expert, just a friend of someone who struggled with it as long as I know her.
1. I have had enough of endo surgeons who tell you they cannot remove everything with one laparoscopy. A good endo surgeon will remove everything there is to remove and endo won't come back for at least 1-2 years after excision surgery, even though the majority of people I know who underwent excision surgery didn't get it back for 4-5 years.
I would absolutely consider going to an ENDO SPECIALIST with extensive experience in EXCISION SURGERY and excellent success rates. Look online, on Facebook forums and find a great one. Having lots of laparoscopies can be so counterproductive and actually worsen her symptoms because more surgeries mean more cutting and more cutting means more adhesions.
2. The drug you are talking about is a menopause-inducing drug basically. It might have the same side effects as menopause. I would have asked for Visanne before going for something that harsh.
3. Your chances of having a baby after a successful laparoscopy are quite high if the tubes were not affected. If she underwent several surgeries or the surgeon wasn't good enough or had much expertise, the chances are low. It all depends on how well the surgery was performed so I highly recommend you seek a REALLY GOOD SURGEON (I cannot stress this enough!). I know many women with stage 4 endo who conceived naturally after surgery but their surgery was performened by one of the best endo surgeons in the country.
Thank you Stefania! I really appreciate your advice! If the surgery is being done on the NHS, can you choose your surgeon? I'm sure my wife will have looked into that (she's far cleverer than j am you see) but it's interesting to know that you think a good surgeon should be able to get it all out in one go.
just an addition to your first point; if additional surgeons are required it may need a second op. I had my first lap with diagnosis of endo plus excision of any that they find if they find some. My endo specialist did my op, but couldn't remove the endo off my bowel as he required a colorectal surgeon to be present - obviously they didn't know they'd need him until they had a look. So I needed a second lap to remove just the endo on my bowel. This was done privately where they tend to do the diagnostic lap with excision of endo in one, resulting in a reduction of symptoms quicker; less waiting times. The usual method is the diagnostic lap with biopsies then rebook in for an actual removal of endo lap (usually ablation or laser / diathermy) where because they know they extent they can have all the surgeons they need present.
It was just an fyi!
In agreement with the recurrence; a good endo surgeon once removed all the endo they can via excision the regrowth time before presenting with symptoms again is about 2 years, needing an operation about 5 years from the first lap. If other methods apart from excision are used regrowth can occur in less than 6 months. My specialist doesn't expect to see me again within 5 years, hopefully 10.
Agree though, really good surgeon needed; have a google of mine, Mr Philip Kaloo to get an idea of what to look for. He's actually the main specialist for our Cheltenham endo and pelvic pain clinic both NHS and private. You want to look for a surgeon with endo specialism, excision and laparoscopic procedures as a minimum.
I absolutely 100% on recurrence and you're right, sometimes they do need other surgeons to be present, but I wanted to highlight how important it is to work with THE BEST endo surgeons. I live in Italy, where endo surgery is extremely well-perfomed (we have one of the best -if not the best- endo center in Europe, where n-acetylcysteine was firstly introduced as a potetial treatment, one of the first in thr world to make Visanne available, the first government to recognize endo as a chronic disease and introduce discounts and free ultrasounds for endo women and even the best endo and adeno surgeon in the US is Italian by the way). I don't know about English endo surgeon but I wanted to suggest how vital it is to find someone EXCELLENT, not just good.
Hey, seriously, this book would be worth the investment for your entire understanding of endometriosis, if you've both been struggling this long. Its written by one of the TOP surgeons in the world: The Doctor Will See You Now. Author: Dr Tamer Seckin, M.D. drseckin.com/the-doctor-wil...
I hope this not only helps but changes your lives.
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