Endo regrowth time?

I had a laporotomy to remove stage 4 endo from my womb and bowel just over 12 weeks ago. In the last couple of weeks I've been in a lot of discomfort with digestive problems which were one of the symptoms of my endo.

I'm concerned now that it might have grown back. Just wondering if that's possible in such a short timescale? Has anyone had their endo recur in 3 months or less after surgery to remove it?

Thanks ladies x

21 Replies

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  • Hi hun I am so sorry your in discomfort and unfortunately yes it is possible it's happened to me I had emergency surgery with a ruptured chocolate cyst on my ovary and severe endo left with a 12 inch scar down me then not even 3 months later I was in again for more surgery since I've had 5 more various types as it does grow that thick and fast for some, I think you need to speak to your specialist. Hope all is ok for you and you get sorted out and your pain eases xx

  • Thanks for your reply, I'm seeing my consultant later today so will see what she says. Fingers crossed for good news though! X

  • Awww I hope it goes well for you and that everything is ok. Yes my fingers crossed for you Let me know how you get on xx

  • Many women on this forum report endo returning in a very short space of time following surgery. I've seen some women report an immediate return of symptoms.

    May I ask, why did you have a laparotomy and not keyhole i.e. laparoscopy? What reason was given?

    You only mention digestion issues. What type of issues are you having? (don't worry, we're all friends here and have been through a lot!) Having major abdominal surgery will undoubtedly upset the digestion, particulary the bowels. There are a few things you can do to help with this but tell me more and I might be able to suggest something. 12 weeks is still early days in the healing process but it's important to get on top of this to support your recovery.

    Have your endo type symptoms returned, meaning pain, heavy bleeeding and gynaecological symptoms you had prior to your op?

  • Thanks for your reply Brownlow. I had a laporotomy because the endo was very extensive and my gynae needed to check the tubes and ovaries hadn't been damaged (thankfully not!)

    My main issues at the moment are bloating, wind and diaorreah within an hour of eating. I'm eating normally. I'm also very tired all the time and am sleeping very deeply, like I'm totally zonked out, which is very unusual for me.

    I'm not having any of the gynae symptoms as I'm on Microgynon back to back to prevent periods for 12 months. Am also on Norethisterone as I was having breakthrough bleeding.

    Any advice would be very much appreciated!

  • I find it very difficult to respond to you without seeming incredibly negative. I think the best way is to explain what happened to me. I seriously question your gynaecologist and feel he/she has done you a disservice. 'Extensive' endo does not require a laparotomy in the right hands.

    I had stage 4 endo removed 8 years ago by keyhole using laser. Fibroids were also removed. A year later symptoms returned but they came and went over the years. 2 years ago it got worse and I was diagnosed by the same endo surgeon with stage 4 endo, ovarian cysts and fibroids all back in the same location. This was concluded from an MRI. He recommended total hysterectomy including uterus and ovaries and would only do this by laparotomy. I completely disagreed with him and figured out he didn't have the skill to complete such an op by keyhole but didn't have the nerve to admit it.

    A year later, after being distracted by breast cancer, I returned my mind to dealing with the endo which by this time was very bad. I tracked down another endo specialist who was baffled by the hysterectomy by laparotomy recommendation. Last May she removed all the endo, fibroids and cysts by keyhole and surgical excision (not laser which is not effective - it can come back) and I've been fine since. I still have my uterus and ovaries. I was one of her worst cases and had a frozen pelvis i.e. everything stuck to everything with endo and bowel involvement too.

    Your gynaecologists sounds very ignorant of endo and also lacking in confidence and possibly experience of keyhole and laparoscopy. I really don't like using the word 'ignorant' but that is my current conclusion based on what you have written. You will find this often with surgeons who are old enough to have started out by doing everying by laparotomy and then had to switch to incorporating keyhole and laparoscopy into their repetoire. As Lindle mentions, he/she probably doesn't even have the appropriate training hence the laparotomy route.

    Personally I don't believe post op contraceptive pills are a good idea. They are often used by surgeons to cover up their own lack of ability to effectively remove endo. So it's impossible to know if the surgery has worked or not or if all the endo was removed.

    I find it shocking that ovarian cancer was even mentioned to you as a possibility before your op. The thing to do would have been an exploratory laparoscopy for diagnostic purposes and then map out a fuller operation to treat effectively. There are plenty of endometriosis specialists in and around London (not all of them good).

    I'll reply to your bowel issues separately.

  • Hi Tearsinrain84, I agree with Brownlow it sounds like just lack of skill, in the right hands your case would most likely to have been dealt with laparoscopically. Do you know how your endo was surgically treated was it excised - cut out or burnt - diathermy, ablation?

    Just one thing though Brownlow as it really useful / important to know, during surgery the laser is just a "tool" some of the really good endo Specialists also use laser to excise endo too. It's just when laser (or anything else) is used to burn endo it is bad.

  • Yes, Arcadia, I agree re your comment on the laser. I know my recent surgeon used it during my surgery but in the wrong hands when used for burning, the risk of return of endo is high.

    A good distinction to make and one that really helps demonstrate that not all surgeons are brilliant by any means. I believe that many hide behind throwing drugs like Zoladex at patients and then use simple tools like laser to earn a quick and easy buck. Apparently, laser is a very easy tool to use for burning endo. Easy for the surgeon that is, not the patient!

  • Totally agree with you! Tragically it does seem that some of them just "treat" or fob women off, with whatever is easier for "them".

  • Disagree. I asked doc to put me on pill after endo surgery. Some ppl believe u shld wait at least a year b4 going back on b.c. but if u get on one with high progesterone like I did it will help. Problem is when u go off. That's another story. I'm going through it now. Try and use a natural progesterone creme and not the pill. It will keep u from bloating. The pill does cause bloating bcuz the hormones are synthesized

  • I had a hysterectomy and any time there is an incision made in the abdomen u will have gas. I had it for at least 6 mths after my hysterectomy

  • As Brownlow asked, my first thought is why you had a laparotomy as this is a very invasive form of surgery and would be rarely undertaken these days. It is easier to miss endo too as the sugeon doesn't have the magnification of a laparoscope. Can I ask if this was done in a specialist endo centre as complex stage 3/4, rectovaginal endo surgery of this nature must only be undertaken in a skilled centre where the lead surgeon has completed at least two years' advanced excision training as required by the RCOG/GMC, the bodies that regulate gynaecology in the UK. Where are you located?

  • Hi Lindle, no it was performed by a consultant gynaecologist at a private hospital in London, where I am based.

    Before the surgery they weren't even sure it was endo, that term was only discussed with me afterwards. At one point they were concerned it might have been ovarian cancer! So it's been a bit of a roller-coaster but I've been very happy with my consultant so far.

  • HI, I was diagnosed a year ago with moderate endometriosis but none was removed , now I am experiencing digestive problems and symptoms of ibs and in agony when trying for the loo sometimes. I don't know what stage my endometriosis is as they never said they just told me where it was but my friend experienced endometriosis quite quick after her second lap!!!!! Hers came back very quick and was really bad xx

  • I too have stage 4 endo. I had my lap in March then another in November, they saI'd a couple of weeks ago that both of my tubes are really blocked and one is now past the point of no return. My whole cervix is covered and it's come back worse than what they imagined. I have now grown new symptoms such as psinful hops. So I'm now back on the surgery list for them to fix this as they didn't realise it would be to this extent.

    I guess regrowth is all down to pot luck. I really hope youre not in the same position as me.

    Wishing you all the best with all of my fingers crossed for you!

  • Forgive the pun...but sorry for the long winded reply!!! There is no quick and easy answer but in time you will find your way. The surgery you had makes the bowel very grumpy and it's not good to leave them unsupported.

    Doctors know plenty about drugs, surgery, putting us back together after accidents, doing life saving transplants etc. (Some of them aren't even good at these things). However, they will rarely if ever send you home after surgery with advice on how to take care of yourself to assist a speedy recovery and longterm healing. This is largely because they haven't a clue and they feel they've done their bit. They also get nervous about liability. So it's important to recognise that there is a whole raft of things we can do to aid our own sustained recovery and heal from a major intervention into our body that should not be underestimated. It's important to know when to use modern medicine and to understand its limitations. Only then can we start to be more responsible for our own health and recovery.

    Your bowel symptoms tell me that you possibly have leaky gut/intestinal impermeability. You might also have an infection or bacterial overgrowth in the bowel. Progesterone pills can cause diarrhoea so that's another thing to think about re the Norethisterone. Gluten intolerance (coeliac) or sensitivity is a consideration too. Cutting out gluten and dairy are often a first port of call in dealing with leaky gut as both are very inflammatory. This does not necessarily mean that they have caused your bowel issues or that you can't have these foods in future once your gut is repaired.

    It seems potty to me that you are on a combined pill, Microgynon, with oestrogen in it which is the hormone that drives endometriosis. That's some hormonal cocktail you're putting into your body and the bowel is also affected by hormones. Hormonal pills also cause deficiencies...reading online the following are mentioned....magnesium, riboflavin, pyridoxine, folate, vitamin B12, ascorbic acid, zinc possibly others. They apparently increase the levels of vitamin C, iron, copper and vitamin A. Being aware of this means you can take steps to compensate and learn what foods and/or supplements to take. Personally I don't take supplements without advice from a naturopath. In time, you should be able to get your nutrients from your food once deficiencies are corrected through supplementation and your issues are resolved.

    The fact that your symptoms occur after eating is interesting. The frequent diarrhoea will also mean that your digestive system does not have a chance to absorb essential nutrients from your food and everything is getting flushed out. Over time this will have a knock on effect and leave you tired, anxious, lacking in energy, brain fogged, depressed and open to further illness as you become progressively more deficient. You have already mentioned that you are tired all the time and are completely zonked. No wonder you need to sleep so much. Don't ignore these symptoms. Remember, you are only 3 months clear of major surgery which is very draining for the body.

    Look up 'leaky gut' online and learn all you can. Plenty of good articles and advice but I feel that if you're overwhelmed with it that you find a good naturopath to help you. Here's just one overview article of many mindbodygreen.com/0-10908/9...

    GPs and the NHS testing have their shortcomings but you could get yourself checked out for an infection at your GP. I don't know how good the nhs is on stool sample testing but it might be a useful first port of call. If an infection is found, be wary of antibiotics and think carefully before taking them. If you do take them make sure you get help from a naturopath on taking probiotics as well. While you're at the GP get a blood sample and get tested for essential nutrients such as ferritin, folate, B12, vitamin D etc. Any good GP will do this and if they don't, start demanding.

    I am more familiar with dealing with constipation and can't recommend anything for your particular situation. I do recommend a review of your hormone pills (with a different doctor, possibly the one we discussed via PM). Also a trip or two to your GP to use them for more diagnostics. Then I recommend you follow up with consulting a good naturopath and show test results to them. I'll PM you one who really helped me.

    I also recommend supportive activities like acupuncture, aromatherapy massages, hot baths with essential oils, daily walking (as much as you feel able - even 5 mins is better than nothing), getting good sleep, meditation, doing something creative etc. Getting better is a big project. Above all, be kind to yourself.

  • Thanks everyone so much for your comments and advice, it's very much appreciated.

    I saw my consultant today and she confirmed the endo could possibly have regrown. She has referred me for a transvaginal ultrasound to see what's going on and is also getting a gastroenterologist involved to investigate the bowel related symptoms.

    My scan isn't for a couple of weeks so a tense wait ahead for me!

  • Be aware that endo does not always appear on US scans or even MRIs. They can be useful but not conclusive.

    Also be aware that gynaecologists often pass women with endo on to gastroenterologists when the ultimate source of their bowel issues is the endo. Only an accredited endo centre will have colorectal surgeons who are versed in endo and the gastro you have been referred to is unlikely to be sufficiently versed in endo. Specialists seldom cross over to other specialities and only know about their bit of the body so your gynae will shrug shoulders over bowel issues and deem it to be outside their department. (I'm not saying that your gynae did this). Likewise, the gastros start poking and prodding with cameras and seem unable to admit that the issue is gynaecological in origin.

    By all means go through the process and see the gastro especially to rule out infection. In the meantime I strongly suggest that you make tracks to get referred to an endo centre either on NHS or privately.

    I have grave misgivings about your gynae. She may indeed be a kind and lovely person and appear reassuring and convincing but while those qualities are desirable they not a good measure of someone's skill and expertise. Ideally we need kind doctors with excellent skills!

  • How are you feeling now that it's been a few weeks? I'm scheduled for laparotomy in February and quite nervous about it. Do you think it's only because of lack of experience and/or knowledge?

  • Hey Mommy2 I'm actually feeling a lot better than I did. I have a transvaginal scan next week and am seeing a gastroenterologist so will see what comes of that.

    Regarding your laporotomy my advice would be to ensure you really give yourself enough time to recover afterwards. I was told a 6-8 week recovery time but nearly 4 months on I'm still not really back to normal. I went back to work a bit too soon, so I would advise taking as much time as you need. Try not to worry, the surgery wasn't at all as scary as I thought it would be! I hope you have friends and family that can help you through your recovery. Let us know how it goes? X

  • Thank you. I have 2 toddlers and stay at home but hopefully family will be available to help a lot. I will let you know how it goes in a few months. Thanks Tearsinrain84 X

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