Do we have a choice? If we don’t, why don’t we? It’s our bodies…

[MsWhistledown]

Hello everyone, I hope you are doing as well as you can at the moment.

I was recently diagnosed with Adenomyosis. At 27 a GP suspected I had endometriosis, so I have essentially been suffering on and off since then. I’m now 44.

Last week I had an urgent referral to local hospital gynaecology. Due to abnormal looking cervix. Which looks likely to be ectropian erosions. I’ve had one before. They are benign thankfully. We also discussed the constant pain I am in. She did a scan and also confirmed the Adenomyosis. She said this is likely causing my pain. I have pain every day now not just on my period.

The appointment then spiralled… the consultant informed me of my options. Conservative measures. The Pill. The Mirena Coil. To which I explained I have tried both in the past. Hormonal pills always caused migraines. I am a migraine sufferer and at one time chronically. They are now under control without the need for medication so Why would I risk them returning on top of the pain I am already in?

I tried the coil as well. It was horrific. I was in excruciating pain from the minute it was put in. My stomach blew up and I could barely stand up straight. It was removed within a week and the instant it was taken out I felt better. So, nope I won’t be trying that again.

I said I wanted a laparoscopy to investigate if I do have endometriosis and where it is located. She proceeded to put me off it saying it wouldn’t help my pain and if there are adhesions on my bowel and bladder (both seem to be affected) then there is nothing they can do about that anyway? Hmmm I beg to differ.

She talked about hysterectomy. She went out of her way to put me off of this. She said I am still young and would go through early menopause. To which I said well I’m going to go through menopause anyway and most likely in the next 5 years! Then she said it might not get rid of my pain anyway even though she said the Andenomyosis is the cause of my pain. I know that the only effective treatment for this is hysterectomy. She then said they would leave my ovaries in anyway because of my age and I would still have periods! She also talked about trying Zoladex and its side effects being similar to menopause.

My point is this. Why do they get to treat me and other women like this? I was understandably distressed at the diagnosis and when she started taking me down treatment roads that were all dead ends totally confused me. My interpretation of this consultation was, there is nothing we can do about your condition. Take hormonal treatment and go away.

So, I have made my choice. I don’t want to try hormonal treatment again. I don’t want to try zoladex. I don’t want to mess with my pituitary gland, I already suffer with a thyroid condition and do not want to mess that up any more than it is.

My choice is a hysterectomy. I have no intention of having children at my age so that is not an issue. Most women with Adenomyosis end up needing a hysterectomy and most women say it is the best thing they ever did! So, why put myself through more years of pain, pills with side effects when the answer is obvious to me? Why don’t I have this choice? Why do we have to do battle for years and live with absolute decline in our quality of life?

Sorry to rant. I am just so fed up with it all… 😒

[Bakewey]

you may or may not have read my previous posts! I totally agree with you. Why the battle?

I am 5 weeks post hysterectomy and removal of endo. In bed by 8pm every evening so still not feeling great, but I have to say, knowing the Alien in me is gone makes me smile.

I nearly didn’t have the hysterectomy as prior to it I wax bombarded with calls / meeting with various specialists all highlighting the risks - never the benefits of surgery.

My advice would be to make sure you are seen at a specialist endo centre as the surgery will be complicated, and you will need a MDT if endo has spread.

It is common practice for a diagnostic lap to know how to proceed first. But if you manage to make it to the top of the list, be clear about what you want as surely it’s better to have one op rather than multiple ops. It’s your body so it should be your choice.

I hope you get the support you need soon.

[MsWhistledown in reply to Bakewey]

Thanks Bakewey. I’m glad you are recovering well from your surgery. I have just read your previous posts and sounds like you were being put off your hysterectomy. Glad you stood your ground and I hope it turns out to be the best thing you did for your health.

I am seeing a private consultant at the Endometriosis clinic next week for specialist scan and consultation. I’m hoping to go back to my GP with some good ammunition and I will demand to be seen by a BSGE accredited specialist if I am not able to pay for private surgery.

[Bakewey in reply to MsWhistledown]

You should find that the private consultant will refer you to the most suitable centre. Mine advised me not to attend my local hospital. My GP has been clear all along that they are not best placed to refer me - always stating, ‘ you are seeing a specialist’ so please ask for a Private referral next week.

Consequently, I travelled just over an hour for my operation to a centre which has a good reputation and has been leading the way with robotic surgery.

When I had issues with my recovery I did got to my local A&E and they (once the long wait was over) they sent me to the gyne department (who was known to me for years due to a long period of watchful waiting) who took me back to surgery on my 1st visit and ‘packed’ me the 2nd time. For my final (hopefully) procedure post hysterectomy, I returned to the centre which performed my hysterectomy!

I’m writing this as when making plans I did think about what I would do if I needed urgent treatment and I am delighted to report that my local hospital was kind and considerate in all they did, but I’m still pleased I made the decision to attend a place where robotic surgery is the norm.

Anyway, good luck next week. I’m getting up now to take a shower and then try out my 1st Estraderm patch…

[MsWhistledown in reply to Bakewey]

That’s really helpful! I will definitely ask the private consultant for suitable centre to be referred to. I definitely do not want my local hospital. They have a centre but their CQC rating is “needs improvement” and going by my last 4 visits to that hospital I do not want any further treatment there.

I hope all goes well with your first Estraderm patch!! 😀🤞

[Username12345678]

I’m so annoyed reading your post!! You should not not treated like that. Your choice is a good one. I had adeno and endo and luckily had a fantastic consultant (eventually) who talked me carefully through every option. After trying a few, I had a total hysterectomy at 46. Wish I’d done it sooner. I’m now pain/symptom free and able to live a good life. Push for what YOU need. Best of luck with it, I hope you succeed x

[MsWhistledown in reply to Username12345678]

Thank you. So pleased you are symptom free. I hoping to be in the same position sooner rather than later. I’ll keep pushing for what I think is best for me. x

[bluebug]

You aren't ranting.

Why did the consultant lie to you? You can't have periods if you don't have a uterus!

Any bleeding after having one which would be unlikely would need investigation.

Put in a complaint to PALs about the consultant misinforming you about the side effects from treatment options. Also state you want to be put on the waiting list for a hysterectomy as you have already tried other hormonal treatments but suffer from migraines on them which is a contraindication to continue them.

They will understand this rather than the other side effects some women get from progesterone only contraceptives. I tell doctors my side effects from progesterone only and even though their colleagues have said I shouldn't try the mirena they suggest the mirena!

Btw refusing to put you on the waiting list is a cost cutting measure. They want you to go into the menopause. While the average age is supposed to be 51 some women reach it at 40 while others in their late 50s.

[MsWhistledown in reply to bluebug]

Thank you Bluebug. I will definitely take your advice and push for the hysterectomy. I find it interesting that the consultant was the one who brought it up to begin with, not me. Then proceeded to try to completely put me off it!

I didn’t even think about not having a period if I don’t have a uterus. I was so bamboozled by her talking at me and negatively at that. I felt like I was being told off for even being there. And it was my GP who referred me there!

[bluebug in reply to MsWhistledown]

Not having periods if you don't have a uterus or are on contraceptives has stuck in my head thanks to a Youtuber who is a gynaecologist. She tries to inform everyone about reproduction and sexual health.

So I am horrified a consultant gynecologist or in fact any doctor would describe any bleeding after they have removed someone's uterus as a "period".

[MsWhistledown in reply to bluebug]

She was obviously doing everything to get rid of me and put me off surgical options. I’ve seen the letter she sent to my GP and she has asked me to be referred to general Gynaecology. She doesn’t have a clue or just wants me to get lost in the system. And she is a woman!! She should be my ally!

[Sunset-lady]

I would get an MRI first to see what they are dealing with. Most MRIs will show DIE and will let you know if the bowel is affected. I went in for hysterectomy and it had to be abandoned as they found stage 4 endo which they weren't expecting and weren't sufficiently skilled to deal with. So push for an MRI and then make the decision from there x

[MsWhistledown in reply to Sunset-lady]

Thank you Sunset-lady. I will definitely bare that in mind. I have an appointment at the Endometriosis clinic next week so I am hoping to get some decent advice then. x

[Escapologygirl]

I read your post and couldn't agree with you more, it is our bodies and why are we getting 2nd class medical treatment? I'm in Republic of Ireland and we have no BGSE centres and only recently a specialist endometriosis centre opened in Dublin and has 2 supposed specialist consultants. I say supposed because I finally got my appointment to see one and was never so insulted by a consultant in my life. I was offered all the usual hormonal treatments despite my medical records saying they don't agree with me the side effects are awful and he was wanting to do a laparscopy, I didn't trust him and have no intention of letting him do any surgery. He didn't listen to me in the appointment. I'm now just watching my diet and taking pain meds and I'm 46yrs old.

You know what is right for you and stick with your gut instinct.

[MsWhistledown in reply to Escapologygirl]

It sounds like you have had an awful time Escapologygirl. I’m sorry to hear how you were treated by the consultant who I can imagine you had great hopes for finally being heard by. Terrible and patronising treatment seems to be the norm for us women. I hope your diet and pain meds are helping you and I hope you find a decent medical professional in Ireland who will treat you with the respect you deserve.

Wishing you all the best.

[Southwestsmiler]

Honestly it's terrible isn't it. You have clearly made your decision and you have justifiable reasons, eg you have tried other treatments, you have a co morbid thyroid condition and you have lived with this for many years and you are in significant pain!! It amazes me that medical professionals, like society, still perceive women as having to bear a child. If only it was that easy, mind or body or even wanted or possible. I have finally got the green light for a hysterectomy where I'm 41 but the waiting list will take one year. I am arguing I want my ovaries removed as I have bipolar diagnosis, but actually I think I have PMDD which has been misdiagnosed and made worse for 15 years through taking progesterone as a treatment for endo, so I need this all to stop. They do prefer to keep ovaries in to allow some natural hormones but it can also be managed with hrt. Whilst I'm currently testing shutting down the ovaries with Decapeptyl, I'm taking Tibolone add back which is slightly different than your standard HRT's. All treatments for my endo have not stopped bleeding so I had exhausted everything also. Plus my bleeds are now unmanageable with severe blood loss, anemia, exhaustion. A total hysterectomy and excision to remove any endo is my only option now and I will fight to have my ovaries removed at the same time. Whilst its not always easy to advocate for yourself when ignored multiple times, write down your reasons for your decision and have this to hand. Then write down the treatment options they have suggested and then write down why these won't work for you. Unfortunately every different person you see, will not refer back to your notes or history. Hormones and treatments are complicated and it can be hard to explain why not in the moment. I hope you have the opportunity to be referred to a specialist endo consultant. I believe you can ask to be seen and treated anywhere in the UK if your nearest hospital has a long waiting list. I also believe you can pay and see a private consultant, and then ask them to pop you back into the NHS. I'm not sure if you are due to see this consultant again or still under them, but if you don't have confidence in them, which I can understand, ask their secretary to refer you elsewhere but try and find that service or person and reach out to their admin in advance to check how the process works. It's shit, I feel your frustration and it is totally your choice. Again society tells us that's it's not good to have a hysterectomy or that menopause is such a tragic horrendous thing. However, if you are like me, then all that will be a breeze in comparison to what we are living with for decades and where everything else has been tried and tested and failed. Good luck on your quest but deffo see someone else and say what you want. You could go back to this person and tell them what you want and why, and if they refuse then ask them to refer your elsewhere. Given it takes so long to see people then worth trying to navigate something internally through any existing consult if you can xxx

[MsWhistledown in reply to Southwestsmiler]

Thank you for your advice. That is really helpful.

I won’t be going back to that consultant gynaecologist from my local hospital. She is part of the cancer pathway. I don’t want to be referred to that hospital for their endo centre treatment.

Lucky I have private consultation next week before my follow up with my GP so I will hopefully have advice from the private consultation of where to be referred or possibly they will be able to refer me on. I am also considering private surgery with them depending on how the appointment goes and if I can afford it.

It sounds like you have had a horrible time of it as well. So many women with this condition are treated appallingly! I do hope you get your hysterectomy and ovaries removed as you wish for and I hope you aren’t waiting too long.

Wishing you all the best.

[Southwestsmiler]

That's great you are seeing someone privately and I hope it goes well. I think your justification (not that you should have to plead) is that you cannot manage your condition any longer and it is getting worse and you have tried other treatments to no prevention or improvement. State the impact it is having on your life, health now and over your lifetime etc. I think I even brought up the cost to the NHS of repeated surgery and appointments! Be clear and confident in asking for what you need for yourself, maybe state the medical/justifiable reasons when a hysterectomy should be offered which must be online/NICE somewhere. The only other thing that I feel I need is an MRI ahead of any surgery. I've never had an MRI, only laps and they aren't offered in my county for the review of Endo. I'm quite confused that they have finally agreed a hysterectomy assuming it's endo related and have agreed to remove endo at surgery but no one has looked inside me for endo for a few years since my last surgery to actually know if my ramped up physical symptoms are endo indeed. Seems abit stupid to me but I'm not gonna fight on that one as I want rid now and for the bleeding to end. I think getting an MRI would be a good idea if you've not had one and you are offered that. All the best x