In need of support and understanding

[Ohmygee]

Usually i am not one to openly talk about my experience (so far) but i am in need of understanding as everybody around me (except for my mom) has been dissmissive of my diagnosis and level of pain. I started my periods aged 11 and instantly knew they were unusual. I would be bleeding for 2 weeks with intense cramping and heavy bleeding which lead to huge anxieties at school as on many occasions i would flood through my school trousers (which were grey). Since the age of 12 i have been given hormone tablets including various pills. Last year, 2 months before i became 14 i was admitted to hospital on many occasions with severe abdominal/hip/pelvic pain until my diagnosis in september last year, following a laparoscopy where i also had the coil fitted. The gynae team removed all the endometriosis they could find. 5 months later i became ill again, but this year it feels even worse, i have visited an endometriosis specialist who believes the endo has spread to my diaphragm aswel as hips and pelvis. I have left my high school and am now being home schooled as the pain has affected my life on a daily basis, i suffer with chronic fatigue and am having periods twice a month eventhough i have had this coil for 11 months as well as taking the pill. I am currently waiting for an MRI scan and further surgery if needed. My gynaecologist has suggested the menopause injections but being 15 years old my mother and I are very much against being put into an early menopause. As you can see i am stuck between a rock and a hard place as i cannot have a hysterectomy or get pregnant. Pain relief does not help my constant pain and my periods just wont stop. I am unable to discuss my illness with friends as they just dont understand and my family are slowly turning their back on me as they seem to be tired of my 'sob story'. Please respond

[SatansLeftHoof]

Hi, I'm so sorry you've been through all this, what a horrific experience and I know from personal experience it can be devastating when people dismiss your pain. I would think very carefully about being put into a false menopause as the drugs are very powerful and can cause a lot of awful side effects for some people. Another thing to consider is that hormone treatment doesn't remove the endometriosis it only masks the symptoms by changing your hormonal cycle. Honestly I think your best bet is specialist surgery. I know you're young but nothing seems to be working and you won't be able to get a hysterectomy for a long time. I'm 22 and I want one, I don't like or want kids, I spend every day in pain and all hormone treatments have failed, but can I get one? Nope. Doctors seem to prioritise fertility over everything, including quality of life. Or, in my experience they do. You said you had a lap, may I ask what stage of endo they diagnosed you as having? And were the lesions burnt off or cut out as burning the off only removes the head of the endo and it can (and usually does) grow back the second you get a period, and you're getting lots. If it's cut out it removes the root and it can't grow back, though endo is a chronic condition and it probably will grow back, it will just take years. I'm rather shocked to hear that they haven't considered that the coil may be causing the excessive bleeding and removed it. Bad practice on behalf of your gynae. I really would get a second opinion on his matter. If it's costing you your schooling (and my education was fucked up because I was ill and I ended up leaving early and gaining no qualifications because my school refused to send a tutor for over a year, so I understand) then perhaps the doctors may take you more seriously. You're typically too young for a hysterectomy but I really think it's unfair to leave you in so much pain. What pain relief have you tried? I presume everything? Sorry for the essay and I'm always happy to give advice.

[Ohmygee]

Hi, many thanks for your response very much appreciated. My gynae is a miss and she never told me what stage i have. She was also the one to do my operation and she burned off as she quoted "what she could find". Thankyou for informing me about the treatments, i now know i have the option to have the coil removed. I believe their is a link with the immune system and i have always suffered as a child with anything that is going round. Is that the same case with you and if so do you take anything that helps it? Since taking the pill and being fatigued i have gained an unhealthy amount of weight that i am determined to lose, can you advise me on dieting tips and excersise? I go to yoga and have just finished a course of physiotherapy and hydrotherapy that i found beneficial. I have been on many different pain killers at the moment i am ttaking co-dydramol with buscopan and ibuprofen as i also suffer from ibs

[SatansLeftHoof in reply to Ohmygee]

You NEED a second opinion and to change doctor. I'm not joking. Phone up and demand to know what stage you have, and I'm pretty sure it's a legal requirement for them to tell you. She sounds so unprofessional and I just can't believe you weren't informed of what stage you had or what treatment options you have or anything. Horrendous. I don't think there's a clinically proven link between endo and the immune system. Strangely my symptoms on,y started when I was 19 and before that I didn't even have heavy periods, then all of a sudden I had this constant pelvic pain and seriously heavy, excruciatingly painful periods. I'm not sure about exercise and diet tips, however it may be worth consulting a dietician especially if you have chronic fatigue, which can make exercise very difficult. was the physio and hydrotherapy for the endo or the CF? Do be careful when taking ibuprofen and other NSAID painkillers and I have a rather nasty stomach ulcer as a consequence of taking them and then being re-prescribed them by a negligent doctor who Knew I couldn't take them but prescribed them anyway. I currently take gabapentin and cocodamol. I did take oramorph (oral morphine) but it didn't work so I switched to the gabapentin.

[Amransom in reply to SatansLeftHoof]

My gyno is the best but he also never told me a stage... I have never even heard of stages with endometriosis can you give more insight on those?

[SatansLeftHoof in reply to Amransom]

Really? I am surprised! Here is a link that has more information on the different stages of endo. asrm.org/BOOKLET_Endometrio... Hope this is helpful

[Ohmygee in reply to SatansLeftHoof]

I am in search of a bsge specialist as we speak, i feel so uninformed about all of this. I was told there was no real help out there for endometriosis sufferers and yet in 1 day i have joined 3 groups that have all given me so much insight about things i didnt even know existed. Hopefully soon i will find the right specialist that can tell me all the things my gynaecologist was so blunt about. I have hydrotherapy and physio for my endo, they help me find strenght in my pelvis and help my posture. Yoga isnt for everyone but it is definitely a life saver for me, i stretch muscles i didnt even know i had and although its exhausting work, it really makes me feel more toned and flexible! I feel my body getting tighter and weeker the longer i go without exercise so its a key point in stopping myself from getting any weaker. I am always reading into all these medications, as i tend to have medication thats treating a side effect of another pain killer, its a viscous circle.

Thanks for your help

[SatansLeftHoof in reply to Ohmygee]

I hope you find one! Your current "doctor" sounds rubbish. I was told hardly anything, after my initial diagnosis I was given one leaflet on what it was and that was is. No explanation from a doctor, just a leaflet and the knowledge I was going to be put on zoladex which I later found out fucked up my body. I also was under informed about that too, but that's a whole other story. my advice is arm yourself with as much knowledge as possible before seeing a gynae again then you can fight your corner. I also paid for a private second opinion and you wouldn't believe the difference in patient treatment, even in a single consultation! Wow how did you get that? I can't even get a referral to a pain clinic. I think you should sit down with your doctor and have a proper chat about effective pain killers. Sounds like your "care" is bordering on negligent.

[confusedandworried]

Hi, Firstly let me say I am so sorry you are going through this and at such a young age.

Secondly it is crucial you get the right treatment and the right information about endo so that you can play an active role in your treatment plan.

Unfortunately I know through personal experience that the myths around endo still exist amongst some medical professionals and as such amongst some sufferers also who, understandably, perpetuate the myths regurgitated by the medical professionals involved in their care.

Hysterectomy and/pregnancy rarely "cures" endo and any medical professional telling you otherwise is wrong. There is plenty of well documented research available to read in published medical journals (including online) to support the fact that hysterectomy and pregnancy are neither "cures" or valid/necessary treatment options.

Hysterectomy is actually only removing the uterus and sometimes the cervix, not the ovaries. Removal of the ovaries is called a oophorectomy and removal of the Fallopian tubes is called a Salipingectomy. Removal of any of the reproductive organs doesn't take into account endo that may be, and usually is, elsewhere such as the bowel, bladder, peritoneum etc. So unless ALL endo is thoroughly removed from ALL areas effected then symptoms are likely to continue.

Pregnancy sometimes, for a few women, results in symptoms reducing or diminishing altogether. However more often than not at best all it does it dampen down the symptoms whilst the woman is not experiencing periods only for symptoms to return later. Sadly for some even pregnancy provides no respite.

Now with regards to your gynaecologist suggesting a chemically induced menopause I am really appalled to hear this and really must say please do not consider this as a treatment option. In fact if you reside in the UK I'd be inclined to make a formal complaint as it is against NHS guidelines for anyone under the age of 23 to be on such medication. The reason being is that such medication can effect bone density and this is even more pertinent before the age of 23 because your bone density is still forming and is yet to reach its peak.

If you live in the UK are you being seen by a BSGE accredited endo specialist? Endo is a very complex and, as mentioned earlier, doesn't tend to "just" effect the reproductive organs which is where general gynaecologists interests predominantly lie. An endo specialist is more likely to a) be able to recognise endo in its many different forms and b) have the skill and expertise required to thoroughly excise it (ie cut it out). Burning endo, particularly more deeply infiltrating endo, is less effective as it merely removes the top. It doesn't remove it from the root meaning, much like a weed, it tends to grow back. So if your previous surgery wasn't done by a BSGE accredited endo specialist then it is entirely possible all endo was not thoroughly excised. In fact it is likely they used a laser to burn it off rather than excise it. Research shows that thorough excision surgery increases the likelihood of either endo not returning or symptoms reducing in 50-60% of cases.

You can find a list of BSGE accredited endo centres at the following website: bsge.org.uk.

Unfortunately not all endo centres are equal, some are better than others so it pays to ask around for recommendations. Whilst you are not able to openly discuss individual centres or specialists on this forum you can through PM. Alternatively if you haven't done so already join a group on Facebook called Endometropolis where you can openly discuss such things and request recommendations. You can then request a referral via your GP to any one of the nationwide centres on the list, although I know of at least one that only sees private patients now (Elland Spire).

If you are not in the UK Endometropolis is also a good place to look for recommendations of surgeons in other countries.

It is very important to have access to the best surgeon available to you as this can reduce the number of surgeries needed. Unfortunately with each surgery comes the risk of adhesions and scar tissue forming which in turn can cause pain and other issues in themselves. This is why it is so important to choose the right surgeon.

Finally it sadly is critical that women with endo do everything to educate themselves on this horrid disease as unfortunately there is still a lot of inaccurate and misguided information out there. You can't necessarily rely on your GP or gynaecologist to provide you with the facts. A good reliable source of information on endo can be found on a website called Endopedia so this may be good place to start if you haven't visit this website already.

I hope this helps and I wish you all the best, Jo.

[SatansLeftHoof in reply to confusedandworried]

Is it really against NHS guidelines for anyone under 23 to go through a chemically induced menopause? I was put on zoladex when I was 20 as apparently my stage 1 endometriosis was in a "too difficult" place to remove so they blasted me with zoladex instead. As a consequence I developed knee pains when taking it. I have been off of the zoladex for over a year and a half and I am still getting knee pains but my doctor tells me its impossible for the zoladex to have caused the pains, even though I couldn't take the tibolone add back because it made me vomit so much. I gave now had my second lap and most my endo has been removed baring a patch on my bowel, but if the coil fails to help with the pain of the piece that removes I may have to have further surgery with a gynaecologist and a bowel specialist. If I'm honest I'm not hopeful about the coil, if zoladex and every contraceptive pill known to man failed why is a lower dose hormone going to help?

[confusedandworried in reply to SatansLeftHoof]

Yes it is against the guidelines. I'm so sorry to hear of your experience. These drugs are very strong and not enough consideration is given before dolling th out in my opinion. I suspect because it's seem as a quick "fix". Sadly as I mentioned in my earlier post you can't always rely on the medical professionals when it comes to endo. Hopefully your 2nd surgery was done by an experienced endo specialist which if thoroughly excised will give you the best chance of reducing or eliminating symptoms. The coil has varying degrees of success amongst women but ultimately sadly is no cure. It may, though not always, dampen down symptoms whilst in place but it doesn't shrink or get rid of endo. In fact some of the best endo specialists in the world see no point in attacking endo with hormone based treatments as there is no conclusive evidence that it is effective in treating endo, acknowledging at best it masks symptoms. Thorough excision surgery is considered the gold standard in treating endo though multiple surgeries are best avoided due to the risks of adhesions and scar tissue. Best wishes, Jo

[SatansLeftHoof in reply to confusedandworried]

Thank you so much. Do you think it's worth me complaining due to the fact it's had long standing effects on me in regards to my knee pain? I wish I'd never gone on it. To be honest I don't see any point in "treating" endo with hormone treatments, the best thing to do is excise it. Do you think it's worth me seeking a second opinion in regards to getting my third surgery? I don't want to wait three months whilst trialling the coil only to be told it's another years wait before I can get surgical treatment. I really appreciate you replying.

[confusedandworried in reply to SatansLeftHoof]

You could certainly raise your concerns with your GP and send a letter to the practice manager at least in the hope to deter them from / educate them to not prescribe such meds to anyone under the age of 23 - refer them to the ESHRE European guidelines. Opting for further surgery is a personal decision however it is important to limit the number of surgeries due to the risks. If your symptoms are manageable at the moment then you could employ the watchful waiting approach. You don't have to have the coil inserted. It is ultimately your choice but do as much research as you can to inform your decision. If you think surgery is necessary then again do your research to enable a referral to the best endo specialist available to you. Endometropolis is great for this as you can openly discuss surgeons on the forum. Endopedia is also another great internet resource with lots of info and research about endo and treatment options. It was set up by Dr Redwine who is considered the godfather in the endo world! He pioneered excision surgery and it pains to recently have seen an old video footage of him in the 1980's advocating excision as the best treatment for endo. It makes me wonder why I endured 3 laser surgeries to ablate/burn endo at various times between 2004 & 2009 before finally learning about excision surgery only last year and finally having the necessary surgery this year?? Yet it was known in the 80's that excision was the best treatment option! Sadly I think it's because thorough excision takes a great amount of surgical skill and time, both of which are often

lacking😒. My surgery this year took almost 7 hours, previous surgeries barely took 2. Best wishes, Jo

[SatansLeftHoof in reply to confusedandworried]

I think I will do that considering I'd not want anyone to ever go through zoladex treatment without proper information, which I was not given. My symptoms aren't the manageable kind in my opinion, I wake up and it hurts too much to move my legs. It hurts to go to the toilet and it hurts to walk too much and to sit down. I can't do the hobbies I want to and even morphine doesn't touch the pain. (Currently taking gabapentin, lessens the pain but doesn't get rid of it) If I can get the surgery I'll take it. I'm glad you got your surgery, sounds like it's long overdue! Thank you for replying, I really appreciate and value your help and knowledge.

[confusedandworried in reply to SatansLeftHoof]

No worries and yes it does sound like surgery is the next step for you. It's not fair women are left to suffer in this way. I hope you find a good excision surgeon. X

[SatansLeftHoof in reply to confusedandworried]

I'm hoping the coil will reduce symptoms but I'm really not hopeful! Fortunately my gynae surgeon is BSGE accredited and works with a decent bowel surgeon so I feel I am in good hands, though may seek out a second opinion anyway. Throughout my journey with endo I have been made to feel that the NHS doesn't care about women's welfare beyond prenatal care. If you're fertile you're fine so stop being a whinging woman is how I was made to feel and I'm sure many other women have sadly had the same experience. Thank you for all your advise and help

[mikkid88]

Hey hun sorry to hear you're suffering as much as you are . Like you I bled heavily and often through to my school uniform so I understand how embarrassing and tiresome it can become. I was recently diagnosed thanks to my new doctor as my old one told me that all my symptoms were part of being a woman. I am 26 and have a son and am trying for another although I have been advised against it as not all my endo was removed and my bladder is in a bad way. They have also offered a hysterectomy and hormones but remember that these often just plaster over symptoms and aren't always a cure.

As to your question about diets there is an existing endo diet if you search for it on Google you'll find many tips and meal ideas. This diet is primarily an anti inflammatory diet designed to ease symptoms but obviously is not a fix to the endo itself.

Like the other ladies I would suggest speaking to gynae or your endo specialist to see what options are available and if you aren't happy speak up. You are young and shouldn't be in this pain and you deserve to be taken seriously.

I understand completely about the family many members of my family don't understand the condition and wonder why some days I can't do things. Luckily my sister is understanding as she suffers from polycystic ovaries and my partner has been a huge support. Just remember your mum will always be there for you fighting your corner and ignore the others.

Here if you ever need a chat x

[Ohmygee in reply to mikkid88]

Thankyou for your comforting reply, it means alot to hear that im not the only one in this position when it comes to family. I will most definitely get on it about that endo diet, i was always a huge fitness freak growing up but now i can't stand for longer than 5 minutes without my hips and pelvis dragging me down. I think i will be in search of a new gynaecologist for my further treatments and shes not been the most sensitive to telling me how it is either.

Thanks again, x

[Nicky-G]

So sorry you are going through this, and hopefully you will feel some support and get advice for other people on here.

Your body has gone (and is going through) so much, which depletes all your reserves and and there is a lot I found I could do for yourself that may not yield immediate results, but will set a foundation for improvement in conjunction with 'help' from the medical profession.

Nutrition has been key for many of us. Ensuring you have plenty b vitamins, for example, and avoiding wheat based, dairy based foods has really helped some of us support our bodies in dealing with the condition.

Henrietta norton - book 'take control of your endometriosis' is a good start. She has a website too.

This site has lots of handy tips if you search on here under diet, nutrition to see what people have tried adding or removing from their diet.

This is an area that perhaps your mum can really help and encourage or research you with, especially on bad days when you need it. It is difficult' and needs willpower to adopt changes, but so many have said once you feel the improvement they feel compelled to continue.

I really hope you find a small step In The right direction, that will help set you on a better journey, and you'll find this empowers you even more research helping yourself. It took me until I was 35 to realise I had the biggest impact on how I was feeling, starting with small steps. If only I could rewind the clock!

Best wishes x

[Ohmygee in reply to Nicky-G]

Thankyou for your response, i have been on many diets since i became ill and began to gain weight but some of these diets had the worst affects like increasing my fatigue, headaches, weakness. I am trying to find a healthy balance for my fatigue with a good diet, exercise and my school work without feeling completely drained the next day. I have a occupational therapist that is helping with the mental side of my fatigue and i have found excersises such as swimming and yoga to be very beneficial in keeping my strenght. All i need is a diet so thankyou for giving me a name to research into, i really hope if i can manage my fatigue i will be in a better position for further treatments with the endo.

Thanks again x

[Amransom]

Hello Ohmy... My endometriosis is not even as bad as yours and may I say I am so sorry! I was diagnosed with my endometriosis at about age 16 now I'm 21. I had went to many hospitals and went through many test till I found out. But I had my laparoscopy @ 16 and what my doctor did afterwards was put me on the menopausal shots. I promise you they are not as bad as they sound. You will still be able to get pregnant with them (My cousin has the same thing and now a beautiful baby boy). I had the same freak outs as you. Ask your doctor about Danazol and Estradiol, those were the pills I was on. They were magic after those shots. We had thought my endometriosis came back but it turns out I have ovarian cyst, fibrosis and the equivalence of varicose veins on my uterus and ovaries... But now that my endometriosis has subsided I'm getting mirena (IUD) that releases hormones and eventually stops your period so ask your doctor about that also! I hope all goes well with you! Let me know how you feel about anything I have said.

[Ohmygee in reply to Amransom]

Hi thankz for your response, i have got the mirena coil fitted and having it removed (hopefully) as it has made my periods more heavy and i am having them twice a month. I have met with one endometriosis specialist who believes hormone treatments are not my cup of tea as my body keeps fighting against them, she wishes to remove the coil, have an MRI scan to see the whereabouts of my endo as she thinks its spread to my diaphragm. Surgery seems to be the path i have been put on so the best i can do is find a bsge specialist and have my endo excised instead of burnt. Thankyou for the medication tips, i am always terrified of new medications as i fear a stomach ulcer.