Daughters symptoms are back with a vengeance 😩

Hello ladies.

This is my first post and I'm feeling pretty desperate. My 19 year old daughter had a Laporoscopy in November and was treated for endometriosis which had attached her bowel to her uterus.

This was done privately as after a catalogue of nightmares on the NHS where they kept treating her for bladder/kidney problems including 10 different antibiotics in the space of 6 weeks and 7 nights in total in hospital. An ultrasound done while she was constipated which resulted in her being told they " couldn't find her ovaries".

I decided to google her symptoms and we made the decision to go private as she was in so much pain I was actually worried for her mental,health. Thankfully it was the right decision as was discovered in the lap.

The last two weeks however she has been in constant , increasing pain and her gynae thinks it may have come back. We had to go to A and E this morning but all they could do was give her a painkilling injection (this hasn't worked)

She has an appointment on Thursday and they are going to give her an injection which apparently she can only have up to 3 times? I just wondered if anyone else has had a similar experience? It is breaking my heart to see my daughter in so much pain when she should be having the best time of her life, instead she is worrying that she may never have children. Feeling useless.

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  • Hello, sorry your daughter is having such a hard time. It must be awful for her and so worrying for you.

    I'm 32 and had symptoms for years so appreciate what it's like to be fobbed off. There's lots of great support on here and lots to learn.

    I'm no expert so please don't read this with panic but unfortunately from what I've learned so far private treatment isn't always the best for endometriosis. Although some will be very good.

    I too have endo that's penetrated my bowel and I am on the injections you're describing. I'll tell you what I know about my treatment and what I know about endometriosis treatment in general which I hope can help you and your daughter.

    The particular injection I have is called prostap which I get every three months. Other drugs that do the same are also prescribed and some are injected monthly. These drugs work by putting your body in to a state of menopause by basically telling the body to switch off your ovaries. This then stops your period and in turn any endo tissue shedding and acting like a period. The body will go back to normal once you do taking the drug. Only after having this have I appreciated how powerful hormones can be and can't honestly say I don't like being on this drug although it has reduced my pain significantly. In addition to the emotional side of the drug there is also a sinister side for the health of your bones especially for young people. If this is what they're offering your daughter they shouldn't be as this drug isn't recommend for anyone under 23 and I believe some studies suggest you should be even older than that before considering it. The drug has other side effects which for me have been hot flushes, night sweats, depression and insomnia but we're all different and others may feel differently. Either way I'd strongly recommend doing some research of your own and would urge you to plan another solution before Thursday.

    With regards to endo on the bowel, did the surgeon say they'd removed this? I'm (through the nhs, after finally finding a doctor who'd listen) under an accredited endometriosis centre in the north of England. I have stage 4 endo and as my surgeon first wanted to look before treating so I've recently had a diagnostic lap. This is where my bowel involvement was diagnosed. I don't know the full details yet but my next surgery will be done by my gyny and a bowel surgeon who meet the accreditation standards to allow the hospital to be an endo centre. Obviously I don't know but if your daughter was only operated on by a gyny surgeon may they have left the endo on the bowel and could this be the cause if her continued pain? Additional to this query would be how well does the surgeon really understand endometriosis? As you'll soon begin to realise on here some gyny surgeons aren't very familiar with it. This isn't to say they're bad surgeons, it's just that their primary focus is the reproductive organs and their function. Endo can get in and behind places these surgeons have no reason to ever check thoroughly meaning that many girls and ladies are mistreated and misdiagnosed. Finally you need to know how the surgeon dealt with the endo. Did they cut it out (excise) or burn it off. The latter is known to be less effective with excision being what you'll hear termed 'the gold standard'

    Given the symptoms you've already described I would advise that you search on here for a lady called Lindle and read her post on rectovaginal endometriosis. Her articles will give a much clearer description of what I'm skimming over. She also has a post on nhs centres and referrals. I know you've maybe lost all hope for the nhs, but now I'm on the right path I'd recommend reading it even if just to have it in your back pocket (so to speak) once you've made your enquires at your current hospital.

    It's probably not going to help much but in terms of painkillers I've found that paracetamol and codine are useless and that anti-inflammatory drugs like ibuprofen work much better but nothing works as good as heat so a hot water bottle or similar is my top recommendation!

    Having endometriosis can be a very trying mentally with what seems to be the added disappointment of not always being able to rely on doctors. I feel like I must to warn again that strong drugs like prostap are not by any means a cure and must be treated seriously due to the affects you can feel and those you don't.

    I hope this is useful and I haven't lectured you as I really don't mean to. If you or your daughter want to talk our ask anything else about my treatment please feel free to respond here or by personal message.

    I hope you find the answers you need xx

  • Thank you so much for all this info. She was treated by a lovely gynae who specialises in endometriosis and she is continuing to see her under the NHS now and she is very supportive. She removed all the bowel endo and showed us the before and after pics. This was burnt off however so I will ask her on Thursday about this. The injection I think she is suggesting is given once a month for 3 months only. I've had her in tears this evening and telling me she can't handle it anymore which is just so awful to hear but now you have given me some ideas and questions that I need to ask I feel a bit more in control again. Thanks again and I'll post again after Thursday. πŸ™‚

  • No problem. So sorry to hear how bad your daughter is feeling. It really is awful.

    I'm a bit of a control freak at the best if times so I do all my reading when the endo makes me feel out of control!

    It's great that your daughter can be treated by the nhs by someone she trusts. You'll be able to use the links that Lindle supplies to check whether or not the hospital is an accredited centre or not and whether or not you think it needs to be for your daughters treatment. I know I need bowel surgery so for me a bowel surgeon skilled in treating endometriosis is something I'm glad to have!

    Best if luck for Thursday, I hope your daughter has a better day tomorrow x

    PS a few posts earlier someone has supplied a good prostap link

  • That's great, yes I like to head much info as possible. In fact when we went for the initial consultation the gynae asked me if I was a dr! Thanks again 😊

  • healthunlocked.com/endometr...

    Easier if I just give you the link 😊

  • Thank you so much for this. Have read through and quite frankly I feel a bit sick but I prefer to be prepared, am just printing it out now so I can make some notes ready for Thursday. Thanks again πŸ‘πŸ½

  • It's overwhelming. If I were you I'd read it through the day. It's scary when you're just sat reading alone and especially at night when your mind wanders. My own surgeon told me that although it's a lot to take in they see and deal with it successfully every day. It maybe isn't fully curable but there's certainly ways to make it much better than how it is for your daughter today. Just think about that and save reading for daylight 😊

  • Good advice and you've made me feel much more positive. 🌟

  • No problem, glad to help. Anything else just ask x

  • Are the injections she is having called Zoladex? If so, I found those to be amazing. I was only allowed 3 over 3 months and they are excruciating when they're administered but for the 5 seconds of intense pain, it's worth it for the rest of the month having no pain!

  • Hello. We decided after reading lots of advice to not have the injections for now as she is so young, I was concerned about the effect on bone density. She is now on Gedarel ( contraceptive pill) and amitriptyline a low dose anti depressant which is used to treat IBS as she has developed allergies to nearly all the opioid pain relievers. The last week she has been in hospital for pain management observation but they advised her to go to the GP to be referred back to them as an outpatient. 18 weeks is the waiting time!!! So we have decided to treat this in a more non medical way. I bought a TENS machine which is already giving some relief and a heated infra red pad and I have also booked a pain relief management counsellor to help her learn to deal with the pain. Also found a lady that does laser light therapy so giving that a go now. Fingers crossed these will help her get back to living a normal life for a 19 year old. Not shuffling around in her dressing gown. πŸ™πŸΌ

  • Hi, I also suffer from endometriosis and many other conditions. After trying many pills, coils and injection, I found that I tolerate gedarel the best so I am on it. Recently my GP prescribed me amitryptiline but I checked with pharmacist and you cannot take both gedarel and amitryptiline as they interact with each other!!! They are antagonistic which means neither of them is working. I also have allergy to many painkillers and other simply have no effect. I still struggle to find one that would help but there is no point in using amitryptiline. Also, the first effects after taking amitryptiline are first felt after at least 6-8 weeks of regular use. Maybe that is why your daughter's endometriosis came back as the hormons from gedarel are deactivated by amitryptiline.

  • Hello. Thanks for your response. She has actually decided to come off amitriptyline and the Gedarel was causing migraines so she has been advised by the GP to come off that as wel but that is very interesting to knowl. However we have made some diet changes and she is taking supplements and she feels better already. The Tens machine seems to be helping with the pain and yesterday she tried Laser light therapy which also seemed to reduce her pain. Back to the gynae consultant on 10th March to see what she suggests to keep the hormones in check and hoping there is something else rather than the injections. Had to complain about another gynae consultant she saw last week as she was admitted for pain management who laughed when she told him she was in pain!!! When I got up there and told him it was unacceptable he laughed and denied laughing at the same time. Needless to say I made it clear I didn't want him dealing with my daughter again. Seriously wonder how some people manage to get so far in a profession......

  • I know. It took me years to convince my GP to even refer me to gynae. I also have a hormon producing brain tumour prolactinoma and had go private to diagnose it as he had no clue what to do with me. The first gynae did sti check and then told me to go and get pregnant as that will heal me. Then she discharged me. Took another few years and only because my endocrinology consultant wrote to my GP asking him to refer me to gynae. They cut out all the endometriosis but few months later I was in pain again. They seem to think that the pill is an answer and prevents endometriosis. But I am on a pill since 15 years old due to painful periods and still developed it so clearly it does not work. Good luck on your daughter's appointment.

  • Yes we had to pay privately for a gynae consultation and treatment as she had been treated for kidney/urine infections and then told the pain was all in her head and to get some psychotherapy. She has had to give her notice in at work as she has had so much time off and even this morning her headache is so bad she is going in late. They have been very good and told her she can have her job back when she feels better and hopefully got some sort of control over this. Good luck to you as well.

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