I'm happy to share. I was only officially diagnosed very recently after consulting an AS specialist, Professor Vancaillie. I had very little support or interest from my FS or clinic in investigating my chronically thin lining issues over the last 12 months and my AF eventually ceased altogether a couple of months ago.
I have had numerous miscarriages (both IVF and natural) 2 of which resulted in 2 D&C's which is the cause of my Asherman's. I was never offered any other intervention other than waiting naturally (which I did both times for an excruciating week) or a D&C.
I had a diagnostic hysteroscopy with Prof V just before Easter which showed I have grade 4 AS (severe) with extensive scarring covering most of my uterus, adhering the walls together and my cervix was completely scarred shut. My specialist was able to open my uterine cavity 95% and he applied a barrier gel to try and stop the scarring reforming and put me on premarin (estrogen). An MRI showed some vascular issues and there has been some damage done to my endometrium which is now patchy in appearance and may or may not regenerate.
Prof V does approx 20 AS surgeries a year and reckons most FS might see 2 on average in their career hence it is very poorly understood and as a result is under diagnosed. I was the 2nd IVF patient to present to my specialist that week who had been having ongoing embryo transfers into an environment that was not suitable to sustain a pregnancy and the warning signs for AS (eg. scanty or absent period) had been mismanaged so I am really pleased to hear you found an FS with AS experience.
My AS specialist now has my chances of carrying a baby to term at around 30% and any pregnancy is now considered high risk due to the increased risks of pregnancy loss and placenta issues.
I will be having a 2nd hysteroscopy in mid May with the hope of making my uterus scar free and a further MRI some time after that to see if the removal of scar tissue will allow the damaged endo to regenerate.
I have been reading some encouraging stories of endo regeneration post surgery from the yahoo Asherman's support group. If this occurs then we may be able to attempt another transfer later in the year. If not then we may have to consider surrogacy or ending our quest for a baby. At this point in time I can only focus on one step at a time i.e. the next surgery as I still find trying to think about the whole picture quite overwhelming.
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18-04-2012 19:57 #11
Last edited by Starf1sh; 18-04-2012 at 20:03.
20-04-2012 09:44 #12
Thanks for sharing Starf1sh, I was very lucky finding my FS as we only have 2 IVF clinics within a 600 km radius where we live. I'm sorry it has taken so long for your diagnosis it's horrible when you think back of all the time that has been wasted. It sounds like you're in good hands now though and knows what he's doing. I will be watching out for your May posts to see how your next surgery goes, all the best with it and I'll have everything crossed for you I understand what you are feeling and have been through. Oh I also looked up that post of the post Ashermans pregnancy over 35's, it's great to hear of successes like that it gives us all hope good luck in your journey and I'll be keeping an eye out for you.
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27-04-2012 08:55 #13
I have attached the Clinical Guidelines for medical management of a miscarriage from RWH in Sydney and a fact sheet from the RWH in Melbourne. It also outlines what situations might be appropriate for medical management with misoprostol and what to expect if you choose this course of action.
Obstetrics Guidelines Group 16/8/11 1.
ROYAL HOSPITAL FOR WOMEN Approved by LOCAL OPERATING PROCEDURES Quality & Patient Safety Committee
CLINICAL POLICIES, PROCEDURES & GUIDELINES MANUAL 18/8/11 MISCARRIAGE – MEDICAL MANAGEMENT
This LOP is developed to guide clinical practice at the Royal Hospital for Women. Individual patient circumstances may mean that practice diverges from this LOP.
• To offer women with early pregnancy loss an alternative to surgical or expectant management of miscarriage
• To complete a miscarriage by medical treatment
• Woman with incomplete miscarriage: sac or retained products of conception <20mls in volume
• Woman with an anembryonic pregnancy or early fetal demise at less than 9 weeks gestation : crown rump length of embryo <25mm or mean sac diameter of <35mm
• Discuss surgical, medical and expectant management of miscarriage
• Give woman information leaflet for the medical management of miscarriage where she indicates a preference for medical management
• Ensure she understands this will mean bleeding and pelvic pain, with probable passage of products of conception at home after a day stay admission in hospital
• Advise the woman that in up to 10% of women a surgical evacuation of retained products of conception will also be needed where medical management of the miscarriage is incomplete
• Advise the woman that the bleeding will be heavy for the first two days but she may then have ongoing bleeding for approximately two weeks
• Ensure woman has no contraindication to the use of Misoprostol and understands that the side-effects are likely to include nausea, vomiting, diarrhoea and mild fever
• Consent and prescribe Misoprostol 800mcg PV on in-patient Medication chart, then six hours later one oral dose of Misoprostol 400mcg
• Write outpatient prescription for two oral 400mcg doses four hourly and give to woman
• Document woman’s Rhesus status
• Admit woman after discussion with the Bed Manager to Macquarie Ward between Monday and Friday at 8am in the morning, advise woman this will be dependent upon bed availability
• Take a set of observations before first dose and prior to discharge
• Administer 800mcg of vaginal Misoprostol (whether or not there is vaginal bleeding) by nursing staff or self administration: put lubricating gel on end of gloved finger with tablets and insert deep into the vagina, like inserting a tampon
• Keep woman in hospital for 4-6 hours for observation of adverse reaction and analgesia requirements. She does not have to remain on bed rest unless there is heavy bleeding or severe pain
• Administer a 400mcg dose of Misoprostol orally 4-6 hours after vaginal dose and just before discharge
• Discharge woman home without medical review unless there are clinical concerns, in which case discuss woman with gynaecology team
• Provide Mefenamic acid and the two further 400 mcg doses of Misoprostol to be taken four hourly at home
• Inform the woman that she will bleed, have pelvic pain and is likely to miscarry overnight
• Advise Mefenamic Acid (Ponstan) 500mg eight hourly with food to be taken for the pain and Paracetamol 1g four hourly to be taken for fever
• Administer Anti-D if woman is Rh Negative prior to discharge
• Advise the woman to telephone 02 9382 6111 and ask for the Bed Manager if her bleeding is so heavy that she soaks through two large pads in an hour, for two hours in a row
• Advise the woman that there is a small risk of infection and that she should contact the Bed Manager as above for treatment if her loss becomes offensive smelling or if she has a fever that persists beyond the 24 hours of Misoprostol treatment
• Arrange a review appointment in approximately 2-3 weeks time in Early Pregnancy Assessment Service for a transvaginal ultrasound to ensure the miscarriage is complete
• Offer the woman bereavement support from the Social Work Department or give Social Work reception number. Provide miscarriage literature where appropriate. Social Work information can be downloaded from Social Work folder on the RHW “P” drive : basic Early Pregnancy Loss leaflet and patient information sheet describing common emotional responses and available resources
Consent and prescribe medication as per table below :
Misoprostol 800mcg PV 08:00 Hrs
Misoprostol 400mcg PO 14:00 Hrs
Mefenamic Acid 500mg PRN
PO eight (8) hourly
Anti-D 250iu IM if woman is Rh Negative
Misoprostol 400mcg PO
2 doses four (4) hours apart
Mefenamic Acid (Ponstan) 500mg
PO eight (8) hourly
• Medical management of miscarriage is effective in completing miscarriage in up to 96% of women
• Medical management is only suitable for women willing to have a miscarriage at home
• The use of vaginal high dose Misoprostol is more effective at successful completion of miscarriage than oral or low dose regimes alone
• Misoprostol is not approved for use in pregnancy by the Australian TGA. Use is “off label” in obstetrics and gynaecology, although it has been used extensively both within Australia and worldwide for this purpose. The woman should be informed of this
• The subsequent menstrual cycle usually recommence 4 – 8 weeks following the miscarriage
• Most women can attempt another pregnancy following one normal menstrual cycle and ensuring the miscarriage is complete.
• Women should be advised re the benefit of pre-conception folate and be advised to continue, or start this supplement if they are planning to try and conceive in the next few months
• Surgical evacuation of retained products of conception is more likely the more advanced the gestation
• Blood loss increases with more advanced gestation
• Medical management is contra-indicated in the following conditions :
o Gestational Trophoblastic disease
o Significant haemorrhage
o Contra-indication to the use of prostaglandins
o No support at home
o Bleeding diatheses
• Side effects of Misoprostol include1 :
o Nausea 53%
o Vomiting 20%
o Diarrhoea 24%
o Fever 79%
1 Which approach for first trimester miscarriage? British National Formulary DOI:101136/dtb 2009
2 Neilson JP, Hickey M, Vazquez JC. Medical treatment for early fetal death (less than 24 weeks). Cochrane Database of Systematic Reviews 2006, Issue 3. Art. No.: CD002253. DOI: 10.1002/14651858.CD002253.pub3
3 Miscarriage : Management Royal Women’s Hospital, Melbourne, 2010
Miscarriage – treatment with Misoprostol – February 2011 D10-151 1/2
The Royal Women’s Hospital Fact Sheet / http://www.thewomens.org.au
You do not need to fast. It is ok to eat and drink on the day of your treatment. When you arrive Go to the Admissions desk first. You will be directed to a ward where the nurse who is caring for you will meet you. If you wish, you may ask a friend or relative to come with you. It is best if you can arrange for someone to take you home afterwards. Before your appointment. Sometimes the pregnancy will pass before your appointment. If your bleeding becomes very heavy or you have bad pain you can contact the hospital. See the list below for more information about when to contact the hospital.
What to expect in hospital
A nurse will be available to support you throughout the procedure.
• Misoprostol tablets will be put inside your vagina and you will be asked to rest for an hour. It may be necessary to repeat this after three to four hours.
• For many women the pregnancy will pass between four and six hours after taking misoprostol. For some women it will take longer and may not be complete during your time in hospital.
• Up to half of the women who take misoprostol will have some side effects from it, including diarrhoea, nausea and vomiting.
• Rarer side-effects are shivering, hot flushes or chills.
• The pain can be quite strong. You can have strong pain killers if you need them to manage the pain. It is important that you are as comfortable as possible. Your nurse will talk with you about pain relief.
• When the pregnancy is about to pass, you may feel pressure in your vagina which is usually followed by heavier bleeding, often with clots and tissue. Some women can be quite distressed when the pregnancy passes. If the nurse is not with you, you can call the nurse to support you.
• After passing the pregnancy, the nurse will check whether it is complete or if any pregnancy tissue may have been left behind.
• If you have a negative blood group, you will be advised to have an Anti-D injection. (See http://www.thewomens.org.au for Anti D information).
• Once you are rested and comfortable you may have a shower and then go home. It is preferable that someone can drive you home.
• If the miscarriage does not occur by the end of the day, a nurse or doctor will assess you. You will usually go home and wait for the pregnancy to pass, which is likely to happen within a few days. EPAS staff will keep in touch to check on your progress.
• Please give the staff your GP details so we can contact them about your care.
Going home after a miscarriage:
To avoid getting an infection, we suggest: use a shower rather than a bath; avoid swimming, sexual intercourse or inserting anything into your vagina for at least a week.
Resume your usual physical activities when you feel able to.
Pain: A small amount of cramping is normal for a few days.
Pain relief, such as ibuprofen or paracetamol will help.
Hot packs on your tummy will also help and rest is also helpful.
Bleeding: This is not much heavier than a period and canlast for two weeks or more. Sanitary pads are recommended to avoid any possible risk of infection.
If bleeding becomes so heavy you are soaking more than two large pads in an hour for two hours in a row, contact Women’s Emergency Care on (03) 8345 3636 or come to the Women’s Emergency Care at the hospital.
In very rare circumstances, a lot of bleeding can lead to the need for a blood transfusion.
Heavier bleeding, worsening pain or excessive vaginal discharge may mean you have an infection, which will need to be treated with antibiotics. It is important to see your doctor if any of these symptoms occur.
Contraception: You should have your next period in four to eight weeks following the miscarriage. Remember that if you do not wish to become pregnant, you will need to use reliable contraception straightaway. If you are considering another pregnancy, you will need to discuss this with your nurse or doctor who can advise you about any medical considerations, based on your individual situation.
When to contact the hospital (before or after treatment):
• If the pain is too severe, even after taking regular painkillers.
• If your bleeding is so heavy you are soaking more than two
large pads in an hour for two hours in a row.
• You have persistent nausea, vomiting, diarrhoea, dizziness,
or any other symptoms.
• If you have a fever or chills.
• If you would like support with the emotional
• impact of having miscarriage.
The EPAS nurse will contact you in a week in order to:
• check on your health and any concerns you may have
• check on progress if the miscarriage was not complete
• make sure the miscarriage is complete
• make sure that you are recovering normally
• arrange a follow-up appointment if necessary.
Disclaimer The Royal Women’s Hospital does not accept any liability to any person for the information or advice (or use of such information or advice) which is provided in this fact sheet or incorporated into it by reference. We provide this information on the understanding that all persons accessing it take responsibility for assessing its relevance and accuracy. Women are encouraged to discuss their health needs with a health practitioner. If you have concerns about your health, you should seek advice from your health care provider or if you require urgent care you should go to the nearest hospital Emergency Department. © The Royal Women’s Hospital, February 2011
08-06-2012 19:06 #14
I think I have Ashermans Syndrome. I had a lap a few months ago and my FS mentioned that he removed adhesions from my uterus. I also always have scanty periods :-/ I'm worried though he performed another D&C during my lap, so wouldn't he have created more scar tissue?
10-06-2012 07:57 #15
A 2nd opinion may help to ease your mind or put you on the right path for treatment if this is the case. There is only one A list Asherman's Doctor in Australia, which is Professor Vancaillie in Sydney who has treated me. I see you live in VIC there is a Dr in Melbourne (B list) reputed to have some experience with diagnostic hysteroscopies. I have copied the following from the yahoo Asherman's support group. Alternatively, you could join the Australian chapter of the yahoo group & someone may be able to give you a recommendation closer to home.
B LIST DOCTORS List of doctors who were recommended by other doctors as good hysteroscopists but unknown for their AS experience by group members. For questions regarding this list, please e-mail firstname.lastname@example.org. Assoc. Professor Peter Maher AUSTRALIA
Mercy Hospital for Women
126 Clarendon St
East Melbourne VIC 3002
Phone #: (03) 9270-2760
Fax #: (03) 9270-2769
Email address: email@example.com
Referred by: Dr Gallinat
Asherman's syndrome is often characterised by a change in your AF (i.e becoming lighter or ceasing altogether). If they have always been light I wouldn't necessarily assume AS. During a laparoscope the uterus would have been directly visualised and if the camera was used for the whole procedure it would have minimised the risks of further damage even if the lining was scraped. I have found the Asherman's website an invaluable source of info http://www.ashermans.org/home/ and there is also the Asherman's yahoo group I mentioned.
Last edited by Starf1sh; 10-06-2012 at 08:19.
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10-06-2012 17:30 #16
Thanks Starfish, I have applied to join that group so hopefully I can get some more support there. I'm just so glad I stumbled across this thread, I would have no idea about Asherman's Syndrome otherwise
16-06-2012 09:45 #17
It has been very encouraging to see how many views this thread has had and that more women are getting informed about Asherman's Syndrome and the risks associated with D&C's.
An update on my situation:
It has taken me almost 12 months to get a correct diagnosis from when I first noticed a change in my lining and I can't help but think of how much time has been wasted, precious embryos sacrificed (1 through transfer and the 2nd via a natural miscarriage), not to mention the emotional and physical cost and the significant $$$ spent to get to the place where I am now.
Even following the diagnosis it has taken 2 surgeries, 2 rounds of estrogen and 2 MRI'S under the guidance of an Asherman's specialist for me be able to say that my uterine cavity is now 100% open and free of adhesions
My most recent MRI results have shown regeneration of both the myometrium (middle layer) and the endometrium (top layer) which were likely scraped away by the last D&C I had and there is also increased vascular activity in my uterus. It may never be quite like it was before the D&C's and there is no guarantee that the scarring will not recur or that my lining will respond.
There is still a very long way to go before a baby might safely reach my arms but I am very grateful to the surgeon who treated me for giving me the chance to attempt further transfers and also restoring some of my confidence in the medical/fertility profession.
Please ask lots of questions before you consent to ANY procedure, be as informed as you can about your treatment because no-one will ever be as good an advocate for you as YOU.
Last edited by Starf1sh; 08-08-2012 at 17:42. Reason: update
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21-06-2012 01:22 #18Senior Member
- Join Date
- Dec 2011
- Far North Qld
Starf1sh: Thanks so much for starting this thread. I will be seeing Prof. Vancaillie next week for surgery. I haven't been diagnosed with Ashermans but its looking more like a probablilty. He will also treat my endometriosis and hopefully resolve my pain issue I've been having since my last ivf cycle. I've had a hell of a time trying to get someone to take me seriously, so it was a relief to speak to his bookings nurse who was so helpful and reassuring. After all I've been through I want the best. Isn't that what I pay a private health fund for?!
I will post on here my treatment and results, even if its not Ashermans. The more information there is available, the more chance of saving someone the heartache and stress I've had.
Goodluck to everyone
19-08-2012 10:27 #19
Amps, how did you go with your surgery with Prof V and where are you up to now?
i know there are several other ladies who I have been in contact with who have recently had investigations for AS after reading this thread. Would be great to hear an update from you??
AFM, unfortunately my lining still did not respond after 2 surgeries to clear the scarring and my AF had all but disappeared again so I underwent a 3rd surgery with Prof V yesterday. His school of thought is that even the most minimal amount of scarring can inhibit the lining growth and needs to be removed and obviously scarring across the cervix prevents anything getting in or out!
The good news is that the uterine cavity has remained open and relatively scar free since my last surgery 3 months ago. There were a few very minor adhesions which Prof V described as "tidying up", the cervix was mostly open so we are not sure if this would've been enough to interfere with the lining I'm guessing I didn't get an AF due to my hormones being messed up from the medicated FET cycle which was cancelled.
Prof V could see lots of thick lining at the top of the uterus, however the bottom not looking as good and a bit 'fibrotic' in appearance from where it has been damaged. So the implications are it would be better for an embryo to attach to the top of the uterus rather than lower, but of course we have little control over this. We will be giving it one final shot hopefully in October before considering moving onto surrogacy.
Wishing lots of luck to anyone doing battle with Asherman's and looking forward to hearing more news of post AS babies here!
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20-08-2012 17:15 #20Senior Member
- Join Date
- Dec 2011
- Far North Qld
star1sh: sorry for not posting sooner but I've had some time out from all this, aprtly through choice and partly because my clinic is stuffing me around abit. I had the gall to complain about their 'interesting' patient care and customer service. I'm a human being with feelings, not a number or just $$$$$.
Anyway, I thought I would tell you all how I got on from my surgery. Prof V. discovered that the inner opening of my cervix (os) which leads to the uterine cavity, was almost completely scarred shut. He has opened it back up and going on the period I've had post surgery, it's looking very promising. I did get freaked out when af arrived 11 days late, I was beginning to think it scarred over again. I had the closest thing I've seen in along time to a 'normal' flow. And I feel GREAT!! I wasn't crazy afterall.
Since I've been forced to play the waiting game with my clinic, I've approached another clinic for a 2nd opinion. I nearly fell off my chair when he said he had been trained by Prof V. and they had discussed my case. WOW! It was hard not to cry when I realised he was taking me seriously. Aside from what ivf stuff we talked about, he suggested before I attempt ANY type of transfer, that I have a 'mock' transfer done, just to make sure my openings are open............ My first transfer hurt so much that I still cringe when I think about it.
I'm having a teleconference on Thursday with the 'senior' specialist from my clinic who is based in Perth. He's coming over here for 5 weeks next month so if I decide to give them another go, it will most likely be when he is here. I'm not sure if I want to stay. I will decide after Thursday I guess.
Surrogacy is something we are seriously considering now. My dh is concerned what this whole journey is doing to my body and my sanity. I'm not sure I would cope with another mc and I still have a thin lining issue. Just my luck, my younger cousin who I wanted to ask, she has 4 children of her own, has just found out she's pregnant with her 5th, by accident, gotta love anitbiotics and the pill. SIGH!!! We should be so lucky! HA!
Good luck ladies
don't forget, your best advocate is yourself!
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